Help get Orin and Olivia home

£59,921 of £200,000 goal

Raised by 1,317 people in 47 months

Hello and thank you for taking the time to visit our page.

We are Stephen and Lyndsay Arthur, parents of Orin and Olivia. Twins with a life limiting illness called pompe disease ( https://www.pompe.com/en/patients/about/progression.aspx).

Please take some time to read our story, that is all we ask. 

We have setup this page with the hope of raising enough funds to help us get a house to bring our twins home, to a safe and secure environment and all be together at last after over a year in hospital. We also need to purchase an adapted car for when Olivia is discharged. Finally we need help with day to day finances whilst still at hospital and for home as we are unable to return work at present and for the foreseeable future. 

Our Story (so far)

Orin and Olivia were born into this world on the 4th August 2014. This was the happiest day of our lives. Finally we had our two beautiful babies, both identical weight (6.95 lbs) and height. After 6 years of trying and being told we were unlikely to ever have children, it appeared all our prayers had been answered at once, not only do we have children we now have the perfect family all at once. 


The magic was soon to fade, from the beginning Olivia started to lose weight very quickly, less than 12 hours after getting home for the first time we were back in hospital.  After weeks of investigations the conclusion was that Olivia had a milk allergy, how we wish that had have been the problem.  Our first month in hospital passed by and still no answers on what was actually wrong with Olivia. Orin was also had a visit in with the cold during this time.

Finally after weeks waiting and worrying, we had a stroke of luck. A visiting consultant took a particular interest in the dip in Olivia's chest. He decided to do a quick 5 minute scan. After 20 minutes and 8 other doctors entering the room it was beyond obvious that something was really wrong.


Olivia was initially diagnosed with left ventricular non-compaction, a heart condition which meant her heart had not formed properly, this condition was untreatable and incurable, this is the exact moment our world began to crumble.  We now stood in a position where at 1 month old we were told Olivia was unlikely to survive the next few weeks.

Scans were ordered for the 3 of us the next day, my wife and I were clear, Orin however had the exact same heart condition as his sister.  Here we stood within a 24hr period we were told we would lose both twins very quickly.  At this point we were sent to Yorkhill to begin a cardiac drug which may delay their deterioration and help them survive long enough to get a heart transplant, this would mean taking both our twins to Newcastle and hoping there would be two hearts available for them before their own gave up.  With the knowledge that only one suitable heart comes up in their size every year and they would be 3rd and 4th on the list, we were told to make our peace and say our goodbyes as at this point they were unlikely to make it through the week.

You don’t take that kind of news sitting down, we demanded every test, and we wanted to explore every avenue.  This couldn’t be the end, we had just begun!


After a gruelling month of being told every day to say our goodbyes and be prepared for the worse we finally met with a metabolic consultant, who thought she had a different answer for us.

We waited day after day, hour after hour, for the results of all the tests she had ordered on the day we met.  After a couple of weeks that felt like years Alison reappears, she had news for us, not good news just news…

When we heard the diagnosis and an explanation of the disease, it was apparent why it was only “news”. The twins had been diagnosed with infantile onset pompe disease.  This is an incredibly rare life limiting and progressive disease.  Alison explained to us that pompe was a metabolic disease which affected the body’s ability to process glycerine, this meant that the cells which made up the twins hearts, respiratory system, brain and muscle system would begin to overload and shut down.  The immediate danger to the twins was heart failure.  As the pompe was a progressive disease they were now also not eligible for transplants.

Although pompe has no cure, there was a treatment.  An enzyme replacement therapy the twins could receive every week for the rest of their lives, however this had shown limited success and we were informed most babies with pompe die before they are one.  Now we knew why she said “news”, so they won’t die today but maybe tomorrow, or the day after.
 
The next few weeks felt like we had been buried alive and were waiting to suffocate, we had meeting after meeting after meeting and in the end were left with the single most difficult decision I have ever encountered.  The time had come, we had to make a decision.

Do we start the twins on the enzyme now or not? General consensus was that it wouldn’t work and the only way to know if it would work was to wait for a test result to identify the strain of pompe the twins had, the problem with this was the result would take three to four months to come back and if we didn’t start the enzyme now it was pointless.

To our minds there never was a question!  Do we start a treatment that might prolong their lives or just pull the plug? We were living every parent’s worst nightmare! Whilst the twins were very ill, they were also smiling, gurgling babies.  We agreed as long as the treatment wouldn’t hurt the twins we had to give them every chance we could.

We began the course of treatment as soon as possible. However it came with quite a few conditions, as the drug is currently not licensed in Scotland it would be subject to continuous review to justify it was worthwhile, or put more bluntly if it’s not making much of a difference let’s not waste the money.  As if life wasn’t scary enough the funding of our children’s treatment was in the hands of the local councils, try to imagine our terror in knowing the only treatment to save and prolong their lives was the subject of a who should be paying row between councils.


Once the enzyme replacement therapy had begun it was a waiting game, the initial job of the enzyme is to repair the heart.  This would take up to six months to see significant results and during this time we would have the constant reminder that the treatment could be pulled if their respiratory state degraded below an acceptable level.

The twins responded quite differently to the enzyme, Orin showed immediate signs of cardiac (heart) repair and his breathing improved significantly.  This lead to him being discharged to us within a few months of arriving at Yorkhill, it was fantastic, they were measuring the repair of the heart using an ultrasound method called and Echo.  Each Echo Orin got showed small amounts of repair, not enough to celebrate at this time, though every tiny step in the right direction is always welcomed.



Olivia was showing signs of cardiac repair, it was much slower than her brother. This was fantastic news as we had been told if the heart did not show any signs of repair there was no hope. Poor Olivia had dropped to 4lb 8 and had now reached a point where she required additional breathing support.  It didn’t matter, her heart was repairing we could fight everything else, there was hope.


Enter the Christmas onslaught. Christmas in a children’s hospital is something you wish everyone could experience and at the same time wish no one ever had to experience.  Christmas in Yorkhill is madness, there are celebrities everywhere and the hospital staff make such an amazing effort for the children, hats off to them they spread a little happiness at a time where a lot of the children and parents are really struggling to be here.

By Christmas we now have Orin out staying with us at Ronald Mc Donald house and we have been invited to join in with the Christmas prayer onstage with Jim (the hospital Chaplin, who required no introduction lol) and dance group Diversity.  There is an immediate image that pops to mind of how miserable Christmas in hospital must be, could not be further from the truth, as a family we had a Christmas that will take some work to top.  We were together and had just passed a major milestone by all still being here, what more could you possibly want?  To us the world had very quickly become a different place, when you stand on the edge of the abyss and stare into the darkness that could await you, you suddenly see what is really important to you and to us our two babies being alive and ticking along was everything.
 
Nothing makes you think about the future like the dawn of a new year….


2015 arrived with a bang, this was to be the beginning of a very long year.  January was the beginning of Olivia's long term stays in the ICU (Intensive Care Unit).  Olivia was rushed to ICU as she was losing far too much weight. With a muscle wasting disease, the worst thing that could happen was for her to be dropping in size. Her breathing had now become a terrifying sight to watch.  Our baby girl was fighting for every breath and there was nothing we could do, at this point the dreaded ventilator made its first appearance.  This was to become the dark object in the corner of the room that inspired dread, fear and even terror.


Pompe disease is a cruel, sadistic master. Here we stand with two choices

1. Cling on to the cliff by our nails and pray we can hold on long enough
2. Let go and pray we land on something soft

By the middle of January Olivia’s condition had deteriorated to the point we had two options available

1. Do nothing and hope things improved
2. The ventilator.

The problem we faced with the ventilator was that it involved an anaesthetic and children with pompe under the age of one are not likely to survive the anaesthetic, the very thing Olivia required to save her life was almost certain to kill her!

We chose option 3! Off come the gloves pompe, we will fight you to the bitter end!


Over the next few months we circled the ring with the reaper on a daily basis, yet round after round Olivia showed a strength and spirit that left everyone in awe. We became medical experts, every day was a regiment of research, discussions with consultants and implement. 

Olivia was switched to a high calorie milk and began to put weight back on. However she still required a great deal of breathing support as due to the weight loss she was breathing like she had just run a marathon all day every day.  This fast breathing was burning through calories as quick as we could get them into her as a by-product to the rapid breathing was it made her vomit most of her feeds back up. 

Over the next few months Olivia was up and down more than a yoyo. I have never really been inspired by anyone before and now I find myself stood here at 31 years of age and the first person to ever hold me in a state of awe is my 6 month old daughter.  Olivia can lay there hooked up to a dozen machines, being injected, having bloods taken, dealing with teething, nappy rash, gasping for every breath and still look up at you and smile, a smile that doesn’t ask for pity just a great big cuddle….


Orin is in hospital every Friday for his enzyme replacement therapy, as a result he had reached the point where it became near impossible to find a vein to put a cannula in and this meant only one thing… it was time for Orin to have surgery and risk the anaesthetic, although bigger and stronger than his sister, the risks were no different.  The day of the surgery loomed like a dark cloud, various bugs and illnesses meant delay after delay, finally the day came.  Not that I’m keeping score or anything but 1-0 pompe, Olivia's turn to get her port arrived, 2-0, next came the feeding peg she required to hook her feeding pump up to 3-0.  Finally the day we all feared arrived, the arch nemesis raised his ugly head one more time.


We had finally made it, 04/08/2015 happy birthday Orin AND Olivia. This was the most amazing day of our lives, we were never going to make it here! Wrong family! When you back a Doberman into the corner expect it to come out barking and snapping.  On that day we became a pretty unique case, we are not following any book anymore, we are writing our own futures now.


Over the last month there was meeting, crisis meeting, discussions and heated discussions over the future.  We had spent the previous months fighting tooth and nail to get Olivia off breathing support. All attempts ended either prematurely with a bug or an infection or ended in total failure. 

5 litres of air doesn’t sound like very much, when you think of it in your mind you can’t even hold it, it feels like 1,000 tonnes of concrete when you can’t advance without removing it.  After what felt like one million discussions over our options and the inevitable result, Olivia decided it was time to make some decisions of her own.

Until that day I had never thought of the difference between a respiratory arrest and a cardiac arrest, not that the difference mattered, Olivia had both in the space of a few days.

As Robert Burns once said “The best laid plans of mice and men often go awry”, Time for plan B version 10.6d!

The decision was now made. Olivia went to surgery to have a tracheostomy done the day after her birthday and began life on a long term ventilator.  4-0, not that we are keeping score of course!


Olivia came back from surgery yet again.

Now Olivia is known as the most chilled child in ICU, no matter what you have to do Olivia just runs with it. You want to take bloods? Fine just don’t get in the way of her watching frozen! It really is an insane sight to behold, Olivia watching tv without a tear or noise as a doctor stabs her foot and spends 10 minutes squeezing blood from it and Olivia’s only response is a dirty look as he announces he is done because he has interrupted her by making noise.


We get the call, Olivia’s back from surgery is sitting watching frozen, holding on to her precious “dolly”. As we walk in the consultant meets us to tell us that she’s just back and will probably sleep most of the day and be in a lot of pain, the news that she was awake and watching tv was met by the only response he could muster, he shook his head and walked off without a word lol.


Olivia is now doing much better on the ventilator and has instantly adjusted to it, as we knew she would.  This has opened the doors to a day we had long since stopped even thinking about.  Olivia might be getting home in the next few months.

I say might because a child with a muscle wasting disease, a heart condition, feeding problems, a tracheostomy and long term ventilator does not just go home.  There is a lot that needs to be in place for Olivia to be discharged from the hospital. we require a house the is specially adapted for her, she must have a large downstairs bedroom as she will have a lot of equipment and a dedicated nurse in the room at all times, the entire house will have to be tailored for Olivia as she will have a specialised chair which will require wheelchair access.  We will have to have a vehicle adapted to take her new chair, as this new chair will carry her ventilator, feeding pump and equipment when she is on the move.


After 11 months living at the hospital with 2 children and not being able to work you can imagine our current financial situation.  We have now found ourselves in a situation that is way beyond our control.  Due to Olivia’s unpredictability and the speed at which she can crash we have found ourselves accepting we will be limited to an area close to the new Royal Hospital for Children in Govan.  This in itself raises major problems. Glasgow is an area short of social housing and wait times are up to three years and even at that it may not be an area you would want to live in with two disabled children.

Here we are standing yet again with our backs to wall. Our situation has left us with no choice other than to put our careers on hold. We have also annihilated what savings we had over the last 11 months as living day to day in the hospital environment is extremely expensive.

Finally the end is in sight and we cannot go home because we cannot afford to!

After much discussion on how this situation could be solved it was suggested that we should start a gofundme page.  Our aim is simple unfortunately it is also expensive.

We hope to raise enough money to purchase a home for the four of us to live in, as pompe is a progressive and life limiting disease we have to plan that the situation will escalate as time progresses, so we will require a single level house that may have two chair bound, ventilated children (I have to say, of all I have written here that is the single sentence the hurts the most).  We will also need an adapted vehicle capable of taking Orin in his car seat, his buggy and Olivia in her chair. Finally as we currently renting a house we have day to day bills and day to day living expenses to cover.
 
If you have made it this far I apologise for the length of our story, I have however made it as short as I could for you and I hope you can help in some way.

Thank you for taking the time you read our story so far, it is far from over and we will keep you all up to date on a regular basis

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Hi everyone
Time for an update, as many of you are aware we have come to the decision to bring a close to the fundraiser as of January the first. The purpose of fundraising was always the end goal of securing a suitable forever home for Orin and Olivia and thanks to the incredible response from each and every one of you we have achieved that goal.  Due to the funds we have raised so far we have been able to purchase a home which will grow and adapt with the kids. We have also got the mobility vehicle which allows us to get Olivia out and about.

We would like to take a moment to thank each and every one of you for all the fundraisers, all the sales, all the amazing effort you have put in to help Orin and Olivia. We genuinely would not be where we are today without the help of you all and we are eternally grateful to you all.

Together we have raised £59,470, that is truly spectacular and shows the phenomenal efforts that everyone put into their fundraising efforts.  I know a few people still have funds to put in and the gofundme site will still be active during the next few days while we deal with the final administration, hopefully though you will cease to see the fundraising appeal across our social media sites.

The ending of our fundraising on the 1st also has another significant meaning, it is the beginning of a new year and a new chapter in the Arthur family life. There are a great deal of new challenges ahead of us this year -moving to the Highlands, a new medical team, preparing the twins for nursery and many more yet to reveal themselves. As always we are looking forward to the challenges and adventures this new life will present for us.

This is not the end for us and is in fact only the beginning of our adventure, so we will continue to update the website www.orinandolivia.co.uk with regular updates and pictures so everyone can see how the twins are progressing, as we would love to continue to hear from each and every one of you through the years.

We are continuing to see progress on the move with a final date in January firmly in place.  We have had all the meetings with inverness over the festive period and are happy that they are ready for us.  There is still much work to be done to get a care package in place and establish the enzyme treatment at home, though this was all to be expected with such a big undertaking.  So far the twins have been to the new house and are loving it, Olivia has claimed the living room and Orin has claimed the rest of the house lol. All that remains now is the mammoth task of packing up our entire life and moving it's 221 miles north lol.

We can finally see a light at the end of the tunnel and can begin for the first time to really plan a future with the  twins where our home is established and we can be part of a community for the rest of their lives. There are great times ahead and we would like to take this final opportunity to thank you guys for helping us to get here, you truly are amazing.

There are only two days in the year that nothing can be done. One is called yesterday and the other is called tomorrow. Today is the right day to Love, Believe, do and mostly Live.
Dalai Lama
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Hi everyone, sorry as usual this update has taken so long.
Since Olivia’s last crash we had a repeat performance from her a few weeks ago. Not one to be outdone she decided to have this one 200 miles from home whilst visiting up north.
We cannot fault Raigmore hospital for their treatment of Olivia. We arrived in their car park completely unannounced as we were actually on our way back down the road and had pulled in to get them to have a look at her as she was looking a bit peaky. The day took a very quick turn, Olivia was looking quite ill in the car though she did not appear unstable. That all changed the moment we tried to remove her from the car. We had to shout for oxygen and support as she immediately began to desaturate the moment we moved her. The team in Raigmore were incredibly responsive and fought hard alongside us to stabilise her. It has since materialised that the crashes were in part due to the hospital in Glasgow issuing the wrong sized trachy tubes and the Respiratory Syncytial Virus (RSV) she had was causing enough swelling to trigger a vagal response which can cause rapid crash symptoms when the nerve is pressed.
Now this issue has finally been addressed we are hopeful that in future we will not see such dramatic crashes. The events of the past few months have led us to a massive reevaluation of our present situation and have pushed us to re-evaluate the future for the twins. In recent months on the hospital front we have lost the majority of the core team which have kept us in Glasgow. Our faith in the care delivered by the hospital is at an all-time low. Progression of a full time care package for Olivia has halted completely and show no signs of advancing to an acceptable level in the next year.
These issues are merely the tip of an iceberg that we will not draw out on this platform as this is not the time or the place to deal with these issues and we would prefer not to surround ourselves in the negativity that would follow. We have chosen to take the correct and appropriate official pathways to deal with these issues and will happily keep everyone up to date with the outcomes in due course.
What has become apparent is that the twins and ourselves require the help and support of a family and friends network. Although we have a fantastic network of friends here there is a larger network in the highlands. With this in mind we have been working hard with housing options Scotland and the metabolic team to determine the viability of moving to the highlands with the twins. With the help from all of you so far we have found ourselves in a position where we have enough of a deposit to have secured a perfectly suitable home for the twins in the highlands. We will be positioned close enough to Raigmore hospital for it to be acceptable for the hospital and the twins treatment can be transferred up as well as it is now established and proven.
After much debate and discussion it has been agreed that the low pollution environment would massively benefit both Orin and Olivia. The closeness of family members means even in the absence of a complete care package we can train family members to help care for Olivia in order to help relieve the pressure on ourselves and allow us to shift some additional focus onto Orin’s development ,as he is currently developing much in line with any child his age and is beginning to miss out on normal developmental environments such as play groups. Although we have seen a marginal increase on the night time support we are getting at the moment the lack of daytime careers means we are not in a position that one of us can consistently take Orin to such groups and this shows no signs of improving in the near future.
In the past few days we have had confirmations that we have had a mortgage approved and we can move forward with finalizing the purchase of the house in the highlands (more details will follow). The hospital has begun the process of moving all of Orin and Olivia’s services to the appropriate hospitals up north.
This is a fantastic time for all of us and without a shadow of a doubt we owe it to each and every one of you who have donated, raised funds and supported us on this journey. We still have a massive way to go as we will have to make the inevitable modifications to the house to ensure its future suitability for Olivia. Though we have reached a milestone that even a few months ago was unthinkable, the twins finally have a forever home that can be adapted to suit their needs.
Who could have imagined when we all started this journey together we would be looking at a day where everything was finally coming together. There have been so many ups and downs along the way so far. So many scary times where it looked like the journey was going to end. So many times where we could not imagine where tomorrow was going and here we all are bigger and stronger for it all. We finally have the skills, knowledge and strength as a family to take on this next stage of life – LIVING!
There is still a lot to finalize and organize, so the move will not be overnight. We just felt it was only appropriate to let everyone know straight away, as such exciting news rarely stays quite for long.
As we begin to prepare for the next stage of our lives we would like to take the opportunity to thank each and every one of you who have helped to make this possible and have given us the opportunity to really begin a life with our babies. We could not have come this far without you all.
As we stand today we feel that working within our understanding of the given timescales it would be appropriate for us to end the Gofundme campaign at Christmas time. As by this time we would hope to be in our new home and principal adaptations done. Given that the fund was always of the principal purpose of securing a home and we have managed to secure a mortgage which previously looked unlikely, we feel it would at this point be inappropriate to continue fundraising.
This is far from the end of our journey and we will continue to update the facebook page and orinandolivia.co.uk so everyone can keep up with how the twins are getting on and see the latest pictures. As we have said before you have all played an amazing part in helping us get this far and we would love to keep everyone in the loop of what the future holds for Orin and Olivia. We hope someday this will be something amazing to show the twins so they can really appreciate how much everyone rallied around for them.
A Massive Thank You Everyone
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Friday was an incredibly scary day, in the early hours of the morning we were alerted to Olivia having a desaturation event, her oxygen saturation had dropped to 40% and her heart rate had dropped to 60bpm. As we walked into the room we were met with a very pale and blueish Olivia who by this point was very unresponsive, she very quickly started to drop further despite the trachy changes, suction, bagging and oxygen.  Within minutes her saturations dropped to 4% and her heart rate to 20bpm, at this point I've already started cpr and chest compressions on top of bagging and suction and called an ambulance. Olivia at this point has gone completly limp and grey. Luckily the cpr did the job, we managed to dislodge a major series of plugs from her airway and the suction began to extract large amounts of fluid. By the time the ambulance arrived Olivia was stable and her colour was returning.  She was taken to hospital to have her checked over.  She is now under review as her airway has quite a bit of trauma and she appears to have very dry secretions in her airway, so she will be in for a few days whilst we find a better solution for her ventilation to try and ensure we don't have a repeat incident as we came far too close to losing her this time.
Thank you to everyone for all the well wishes over the last few days, Olivia is looking much better today and a few days r&r are in order.  she will be back on the ward for the next fortnight for r&r and antibiotics then hopefully back put again. We will hopefully be having meeting this week to discuss what happened and see what can be done to prevent it in the future.
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Hi everyone sorry this update has taken so long to get up. We have had issues recently where our computer was hacked and almost all files were encrypted.
We have now also had the fantastic Miss Olivia living with us, she has now officially been discharged from hospital. It was a momentous day to finally discharge Olivia from hospital, we have spent the last 22 months being told this day wasn’t coming and we should make our peace. Yet we never backed down, never doubted her and here we stand stronger than ever!
Every day Olivia shows signs of getting stronger, we have restarted oral tasters with her and hope to build on her quantities quite quickly, she is now managing to sit up with minimal assistance and we are working on strengthening her core muscles every day. We have seen such an improvement with her hips and legs that a surgery to correct her feet which was previously refused by the surgeon is now back on the cards, she will have her feet casted first and hopefully that works to correct them, though if not we now 100% have the surgical option back on the table, which is life changing for Olivia as this has meant we have now ordered her standing frame to being weight bearing on her legs, so Olivia now has a shot at walking, an epic feat by anyone’s standards, the Girl who not so long ago was deemed unlikely to survive at all has not only survived she has stunned them all and is thriving.
Olivia’s homecoming has however raised the additional issue of her care package as this was supposed to have been in place back in December as Olivia requires 24hr care due to being ventilated 24/7, this care package has yet to happen and looks unlikely to be fully in place until after Christmas. This means since December we have been splitting the shifts been Lyndsay and myself as Olivia going back into hospital is not an option we will/would/could consider as her progression since getting out of a hospital environment has been unprecedented and we will not risk back stepping even a little. It does however make day to day life that bit more difficult as up till this month a typical day consists of me doing 21:00 – 06:00 with Olivia, Lyndsay then takes over from 06:00 – 13:00 when I get back up and we go about the days tasks. As you can imagine this is an exhausting routine in the long run, this month we have had a bit more night time cover though still seem some ways off our full package.
Orin has become the family powerhouse, his progress is beyond amazing. In the last update he was starting to walk. Well he’s on those feet big time now! He’s a wee blonde energiser bunny now, he never sits down lol. His eating has improved quite a bit and he is eating more solids, though we still have quite a way to go with it. Currently all the professionals are in agreement that Orin despite all the odds is looking like a normal toddler, unbelievable to be able to say that!! A recent sleep study has shown he still has some breathing issues though these don’t seem to keep him back at all, in fact we have had to install so many baby gates to try and fence him in. You feel like a warden walking around the house lol and his energy levels, my god I wish I had half his energy lol.
Our housing issue still remains exactly that and is probably the most negative portion of this update. We have recently had additional meetings with housing specialists from the council and the outcome both shocked and disgusted us both. After at least a 2 hour meeting in the house we were advised that the council still has no properties suitable for Olivia and her future needs, we need to apply to 15+ housing associations individually, though we won’t rank high on their priority lists, no you read that correctly, we will apparently not count as a priority as the house we are renting meets Olivia’s needs at present. This is despite us telling them that the house is a short term rental and we will need to leave this house within the year. Olivia is already outgrowing the house as she will soon require larger ramps, modifications to the bathroom and more heavy duty ramp access. The answer to these issues disgusted me to my core. The councils answer to the issue was to inform us that when the landlord ends the tenancy we don’t have to leave and as long as we pay the rent it will take them a long time to get us out. All you private landlord out there having issues getting tenants out of your properties, this is the kind of advice councils are giving your tenants, dig in and force an eviction. Now the real kicker, even if we go down that route (and rest assured it is an unethical and disgusting route we would not even consider!!!) we would still not be a top priority and the suggestion would be to put Olivia back into hospital and possibly even Orin whilst we stayed in temporary accommodation (probably a hostel) for the next 3+ years until we can get a property.
This was one of many meeting with Glasgow council, Renfrewshire council and housing charities. Though we did have one offer of a third floor 2 bed tenement flat, with no parking, no lift, no ramp access and they were angry we would refuse it, even after explaining Olivia is completely chair bound so I would have to carry a wheelchair with over 40lbs of equipment up 3 flights of stairs on my own whilst leaving Orin sitting on the side of the road in Govan on his own with a few thousand pounds of equipment in a box beside him. We have even written to Nicola Sturgeon and have been waiting on a reply, nothing as of yet though, so anyone who feels compelled to email her to further highlight our case to her please do! Hopefully if she hears our name enough times she will act on it.
This has really driven home to us just how important the fundraising is now more than ever as we really need to get a house in place in the next year or we will continue to bleed funds on rented properties as we will need to look at a bigger property going forward to meet Olivia growing needs.
Now I have never ended an update on a negative note so I am pleased to announce that we have managed two amazing trips that we were told wouldn’t happen. We have recently been up to the highlands with both twins to have them christened. We have also just got back from Ireland with the twins too. It was truly amazing to see so many friends and family on both side and for so many of the family that cannot travel to us to see the twins. We also managed a day at the Giants causeway, which was phenomenal and both kids absolutely loved it. We even managed to carry Olivia up the causeway a bit so she could enjoy the view and she loved the wind in her hair, going to be a real outdoors girl I think lol.
Both of these journeys were only possible because of the phenomenal efforts and kind generosity of each and every one of you, without all of you we could not have afforded the mobility vehicle and those journeys could not have happened, we could not have rented this house to get Olivia out of the hospital in the first place. Both trips created precious memories that cannot ever be taken away from us and from the bottom of our hearts we thank you for that, you guys show us that we are not forgotten and we are not alone.
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Read a Previous Update
Jim Meighan
36 months ago
3
3

These two kids were expected to die and I was on standby to provide a farewell service. Happily they defied the odds and will only continue to reach each precious milestone with your help.

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Sarah Prescott
47 months ago
1
1

This is a very loving family. The parents are a young couple who have always put themselves out for others. Two more longed for and loved babies you could not meet. Their mother has worked with children with additional support needs always in a caring and compassionate manner for the whole family. Both parents before this happened were exceptionally hard working so please if you can spare anything please do.

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Kathy Godley
30 months ago

All the very best to you your wife and very special twins xx

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Donna Laing
33 months ago

Oh what wonderful news that you are moving north be lovely for everyone to have you all back home xxx

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Dawn Matter
33 months ago

Such wonderful news - I wish all the best to you and your family - I hope you find much happiness in the Highlands :)

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Kathy Given
37 months ago

I met this family in Glasgow hospital and they are lovely. They have been and are going through so much and have a long way to go yet. Please help them reach their target to make their life easier as they care for Olivia and Orin.

+ Read More
James Porter
40 months ago

Hang in there.

+ Read More
Tara Louise Rooney-Bell
45 months ago

Oh my I have tears in my eyes right now. You might not remember me but my little Rohan was Olivia's neighbour for a little while in January and I just can't believe everything you guys have been through since then. I still remember her shouting away at the nurses if she wasn't getting any attention. And I remember the day we got to move closer to home when I talked to Lyndsay and hoped you would get home soon. I'm so sorry beautiful Olivia has had to be placed on a tracheostomy but to hear you are finally getting close to taking them Both home is amazing! I will donate as soon as I can and share your page in hopes others will donate aswell ❤️❤️ stay strong. You have two very beautiful brave little children ❤️❤️

+ Read More
Kay Mac Chapliano
47 months ago

Thanks a lot. I am sitting in a Starbucks 200 miles from home (and from my own Yorkhill boy, who graduated from there in 2012 and has never looked back!)... and I have tears running down my face. Thank God for sunglasses. This has been such a heartbreaking week with children in the news - I am so happy that your story has managed to keep going, and that you have been able to keep your children with you for so long. When I get home I am going to make a donation to your gofundme, and I hope that by that time I am one of the last contributors needed to reach your total! Much love and empathy. X

+ Read More
Emma Laurie
47 months ago

This is a loving caring family who help other parents, give them advice even when they have there own problems. I am a young single parent who has been in hospital with my son for nearly 14 weeks. They are so strong and I am proud of them both, there twins are beautiful and always happy. I'm so glad I met a couple like Stephen and Lyndsay they havrbeen amazing and I am grateful for everything they have done for me. Prayers. Much love xxxx

+ Read More
Lizzee Milligan
47 months ago

May this little family be blessed,and helped all the way to the front door of their new family home,,,,and be watched over on their forward journey through life with their beautiful baby twins....Muvh love sent with this message.

+ Read More
Donna Macleod
47 months ago

Keep reading this over and over, can't imagine what you have been going through. I am amazed by the courage and strength shown by you all. You have two beautiful children. Thoughts and prayers are with you x

+ Read More
Laura 'Kitty' Livingston
47 months ago

My brother was in yorkhill when the twins were brought in, He was in the opposite bed to orin, I couldn't believe how tiny and perfect they both looked. When I heard the news I cried when I got home, i couldn't imagine going through that with my little boy never mind both of your babies going through this. I hear occasional updates and have always had you all in my thoughts, it's great to see how grown up the twins look now. I had the honour of meeting these two strong little fighters and yourselves and all I can say is, you are an amazing family. Xxx

+ Read More
Catherine Bentley
47 months ago

I don't just have a tear in my eye reading this. I am absolutely howling and thankful that my own twins were healthy. You are two of the bravest people I have ever heard of. And of course your little ones. Olivia sounds like an amazing little girl who deserves to grow up and show everyone all she's got. And I bet it's a lot!

+ Read More
Nicola Marie Sutherland
47 months ago

Stephen this was hard for u i know, u should be so proud, im very proud of u both everyday, love u all so much, x x

+ Read More
Sinead Brogan Conwell
47 months ago

It is with a massive amount of pride that we get to call these amazing wonderful courageous people Family. As Stephen and Lindsey aunt. None of us will ever known how they have got this far and manage to keep some form of normality, Orin and Olivia have the most amazing parent ever and Stephen and Lindsey have two beautiful gorgeous amazing baby's. Love you all with all our hearts . Xoxox

+ Read More
DonnaMarie Miller
47 months ago

I know Orin and Olivias story well and still cry every time i think of how far youve all come x i hope you guys can all be together again full time soon xxx sending loads of love xxx

+ Read More
Gillian Toal
47 months ago

Lyndsay and stephen, my heart goes out to you , i didnt realise the full extent of your story and i had a tear in my eye as i read it. You are two amazing people with two amazing kids, courageous, strong and caring, i always knew you would be a great mum lyndsay and was delighted when you told me you were pregnant, but this is every parents nightmare, but you have come out fighting and remaining strong and i admire you both for this. I am going to light two candles for you and your little ones at church next wk so you all remain strong and fighting god bless you all xxx i am off to donate and share. Love to you all xxxxx

+ Read More

£59,921 of £200,000 goal

Raised by 1,317 people in 47 months
Created August 31, 2015
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CS
£5
Chelsea Stojanovic
1 month ago

Sending much love to you and your family plus beautiful bubbas xxx

KF
£10
Kelly Finnerty
2 months ago

I'm a non-identical twin too and I was tiny when I was born. Best of luck to your little ones. I also know how terrible the ICU can be so I hope she gets out of there soon. Xx

£10
Anonymous
9 months ago
ER
£10
Emma-Jayne Richardson
10 months ago

Twin parents stick together. Wishing you all peace love and prayers.

KC
£10
Kit Chaggar
11 months ago

I wish you all the very best. Keep being strong

£10
Anonymous
11 months ago
£5
Stephanie Newson
11 months ago

Heartbreaking to read what your family have and are going through. Incredible tragedy that deserves some support. My eyes were welling up just reading what you have gone through. Sending love and prayers. Sorry it’s not more x

LO
£10
Laura O'Connor
13 months ago
SF
£11
sonny fazli
13 months ago

I'm speechless, all I could say I wish u nothing other than all ur wish come true, you been through enough and deserve every bit of a luck in this life.

Jim Meighan
36 months ago
3
3

These two kids were expected to die and I was on standby to provide a farewell service. Happily they defied the odds and will only continue to reach each precious milestone with your help.

+ Read More
Sarah Prescott
47 months ago
1
1

This is a very loving family. The parents are a young couple who have always put themselves out for others. Two more longed for and loved babies you could not meet. Their mother has worked with children with additional support needs always in a caring and compassionate manner for the whole family. Both parents before this happened were exceptionally hard working so please if you can spare anything please do.

+ Read More
Kathy Godley
30 months ago

All the very best to you your wife and very special twins xx

+ Read More
Donna Laing
33 months ago

Oh what wonderful news that you are moving north be lovely for everyone to have you all back home xxx

+ Read More
Dawn Matter
33 months ago

Such wonderful news - I wish all the best to you and your family - I hope you find much happiness in the Highlands :)

+ Read More
Kathy Given
37 months ago

I met this family in Glasgow hospital and they are lovely. They have been and are going through so much and have a long way to go yet. Please help them reach their target to make their life easier as they care for Olivia and Orin.

+ Read More
James Porter
40 months ago

Hang in there.

+ Read More
Tara Louise Rooney-Bell
45 months ago

Oh my I have tears in my eyes right now. You might not remember me but my little Rohan was Olivia's neighbour for a little while in January and I just can't believe everything you guys have been through since then. I still remember her shouting away at the nurses if she wasn't getting any attention. And I remember the day we got to move closer to home when I talked to Lyndsay and hoped you would get home soon. I'm so sorry beautiful Olivia has had to be placed on a tracheostomy but to hear you are finally getting close to taking them Both home is amazing! I will donate as soon as I can and share your page in hopes others will donate aswell ❤️❤️ stay strong. You have two very beautiful brave little children ❤️❤️

+ Read More
Kay Mac Chapliano
47 months ago

Thanks a lot. I am sitting in a Starbucks 200 miles from home (and from my own Yorkhill boy, who graduated from there in 2012 and has never looked back!)... and I have tears running down my face. Thank God for sunglasses. This has been such a heartbreaking week with children in the news - I am so happy that your story has managed to keep going, and that you have been able to keep your children with you for so long. When I get home I am going to make a donation to your gofundme, and I hope that by that time I am one of the last contributors needed to reach your total! Much love and empathy. X

+ Read More
Emma Laurie
47 months ago

This is a loving caring family who help other parents, give them advice even when they have there own problems. I am a young single parent who has been in hospital with my son for nearly 14 weeks. They are so strong and I am proud of them both, there twins are beautiful and always happy. I'm so glad I met a couple like Stephen and Lyndsay they havrbeen amazing and I am grateful for everything they have done for me. Prayers. Much love xxxx

+ Read More
Lizzee Milligan
47 months ago

May this little family be blessed,and helped all the way to the front door of their new family home,,,,and be watched over on their forward journey through life with their beautiful baby twins....Muvh love sent with this message.

+ Read More
Donna Macleod
47 months ago

Keep reading this over and over, can't imagine what you have been going through. I am amazed by the courage and strength shown by you all. You have two beautiful children. Thoughts and prayers are with you x

+ Read More
Laura 'Kitty' Livingston
47 months ago

My brother was in yorkhill when the twins were brought in, He was in the opposite bed to orin, I couldn't believe how tiny and perfect they both looked. When I heard the news I cried when I got home, i couldn't imagine going through that with my little boy never mind both of your babies going through this. I hear occasional updates and have always had you all in my thoughts, it's great to see how grown up the twins look now. I had the honour of meeting these two strong little fighters and yourselves and all I can say is, you are an amazing family. Xxx

+ Read More
Catherine Bentley
47 months ago

I don't just have a tear in my eye reading this. I am absolutely howling and thankful that my own twins were healthy. You are two of the bravest people I have ever heard of. And of course your little ones. Olivia sounds like an amazing little girl who deserves to grow up and show everyone all she's got. And I bet it's a lot!

+ Read More
Nicola Marie Sutherland
47 months ago

Stephen this was hard for u i know, u should be so proud, im very proud of u both everyday, love u all so much, x x

+ Read More
Sinead Brogan Conwell
47 months ago

It is with a massive amount of pride that we get to call these amazing wonderful courageous people Family. As Stephen and Lindsey aunt. None of us will ever known how they have got this far and manage to keep some form of normality, Orin and Olivia have the most amazing parent ever and Stephen and Lindsey have two beautiful gorgeous amazing baby's. Love you all with all our hearts . Xoxox

+ Read More
DonnaMarie Miller
47 months ago

I know Orin and Olivias story well and still cry every time i think of how far youve all come x i hope you guys can all be together again full time soon xxx sending loads of love xxx

+ Read More
Gillian Toal
47 months ago

Lyndsay and stephen, my heart goes out to you , i didnt realise the full extent of your story and i had a tear in my eye as i read it. You are two amazing people with two amazing kids, courageous, strong and caring, i always knew you would be a great mum lyndsay and was delighted when you told me you were pregnant, but this is every parents nightmare, but you have come out fighting and remaining strong and i admire you both for this. I am going to light two candles for you and your little ones at church next wk so you all remain strong and fighting god bless you all xxx i am off to donate and share. Love to you all xxxxx

+ Read More
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