My name is Archie O Connor. I have set up this page on behalf of myself and my 5 year old daughter Freya Lilly, with the aim of raising money to help fund life changing treatment for my wife Laura Noonan.
Laura desperately requires chemotherapy and a stem cell transplant. Unfortunately, this treatment is not available for Laura in Ireland. She has been accepted to hospital in Russia under the care of a specialist Haematologist where she will receive this treatment. This is currently the last treatment option available for Laura.
Your help would be hugely apreciated by all of us. Any donation, of any amount, will go towards the hospital treatment fees and stay in Russia. There is no funding available at all towards this treatment from the HSE or her private health insurance. She has been down many treatment avenues to date and as her medical problems are many and complex she has been unsuitable for many conventional treatments. No treatment that she has received to date has been successful or halted disease progress. She is suffering severe side effects from the different treatments she has received to date. She will now be stopping some of her current treatments in order to have a drug washout period to allow her to commence intensive treatment in Moscow.
For those of you who know Laura I'm sure this will come as a shock. Laura is intensely private, particularly when it comes to her medical issues. As you know she is outgoing and energetic but believe me she does her best to hide how she really feels. The Laura that we all got to know and love is a very different Laura to the one that we now know. Laura has spent more time in hospital the last 2 years then she has at home. She has even managed to keep things quiet by continung to reply to work emails and respond to text messages from her hospital bed. She spends most of each day in bed. When she is up and doing she is exhausted and unwell. Her little girl is used to her Mammy always being tired and asleep - and she accepts it as normal. Medications, injections. PICC lines and central lines, nasogastric feeding tubes , intravenous cannulae, hospital appointments, hospital admissions, health care professiosnals coming and going to and from the house have all become part of our lives, and for our little girl they are normal. If Freya is sick, or even has a sniffle, she knows that she has to go and stay with her Nanny in case Mammy catches it. She can never have her friends over to play as this increases's Laura's chances of catching something - which in Laura's case would result in another admission to hospital. For her 5th Birthday party, Freya's friends were in one room while Laura had to stay in a different room isolating herself from all the potential germs and hiding her PICC line not to terrify her little friends. She spent most of the day at ther brother's recent wedding in bed in the room while the rest of us enjoyed celebrating with friends and family. She was adamant that she didnt want to ruin the day for anyone and insisted that we all enjoy the day and not ruin things for the happy couple.
Laura first became really unwell when Freya was about 6 weeks old. This means that Freya has grown up knowing nothing but sickness. We are lucky we have a good support network and family around to help us. I look back at sometimes wonder how we have surived the last 5 years but then look at Freya, a well adjusted, confident, outgoing little girl and think we have done well despite it all. She is now in her second year at school, the youngest in her class, and loves every minute of Senior Infants. She wants to be a Doctor when she grows up, "Just like Mummy".
When Laura is in hospital weeks can go by without Freya being allowed to see her. ICU is a scary place for anyone to visit but particularly for a small child. I dont know how Laura can surivive this but she asks for Freya every day regardless of how sick she may be and comforts herself with photographs and telephone calls. Thankfully up to this Freya's sense of time is poor as she is so young. She is starting to understand the concept of time a little better and will be harder to dismiss her questions anout how many sleeps until Mammy is home?
When I look back I wonder how we have survived the past few years. At one point Freya was in hospital very unwell in Temple Street, I was having surgery on my knee and Laura was in hospital too. Stress levels were high but we got through it. With help from our family anad friends.
One of Laura's biggest fears now, is not the treatment that lies ahead, or the the recovery, but her fears around "going public". She has gone from a hospital bed to a medical conference - on more than one occasion. She has even gone from hospital to TV studios to speak about antibiotic use. I remember driving her into RTE studios genuinely concerned that she may not make it through an interview, but not only did she make it through the interview she aced it! All that worried her after was would people notice her puffy face from all the steroids. I'm pretty sure nobody did - only her. She doesn't want to appear anything less than strong and resilient.
We have now reached a point where we can no longer do this ourselves. I will have to take a significant amount of time off work to travel with Laura to Russia. We will spend approximately 1 month in Moscow but that will only be the start of the journey. Recovery after a successful stem cell transplant is likely to take up to 2 years. She will have a long road after coming home but we hope that will be the end of treatments for her. It is not an easy decision to come to, leaving Ireland for treatment abroad but one that has not been made lightly. We are at the end of a very long road and hope that this is the final step on the current road and the frst step on a Russian Road to Recovery.
Laura is loved and needed by alot of different people. Her friends, her patients, her family, her brother and mother ..... and me and her wonderful daughter Freya Lilly. Please help us send Laura to Russia with love.
A note from Laura 5th September 2017:
For those of you who know me you will know that I am a very private person who doesn't like to discuss my personal health issues at all. I have been struggling for the past few years but have always done my best to keep my problems to myself.
My personal motto was always "Get up, dress up and show up". Im sure there will be many who are surprised to hear what the past few years have held for us. I have on more than one occasion left hospital and immediately attended a work or social event. I even did a TV interview straight from the Mater Hospital in Dublin to RTE studios! Unforunately things really started to catch up with me this year and I have had to majorly slow down. I have been very few places this past year (unless hospital counts!) and I haven't managed to make it to many family events. This has gone particularly hard on Archie and Freya who often have to go places themselves leaving me at home.
It is now time however for me to "go public". I have wrestled with this decision over the past few weeks and have had many sleepless nights wondering how people would react. I did not want to have to tell the world my story - but having been accepted for treatment abroad I am going to need help to get me there.
Essentially I have exhausted my treatment options in Ireland and if I have any chance of getting better I have to look to more experimental, riskier treatments abroad. Making the decision to travel has been a difficult one. There have been excellent results to date and people have been doing very well after chemo and stem cells. I am a little more complex than most as have more than one medical diagnosis but I still hope that I will benefit hugely. A sobering fact about this treatment is that there have been deaths directly related to this treatment. This is a fact I was armed with making the decision to go for this treatment. In a way it's probably harder for family and friends to accept that risk.
My quality of life has become very poor. I'm sure some of you would have seen me out running around home until about a year ago. I was always a fit and sporty person but that has been taken from me. I do need to increase my physical fitness before treatment so I will have to get working on that when I am well enough to do so. This new me is not me. I was always full of energy and enjoyed being busy all of the time. I always worked hard and loved my job. I worked up to 100 hour weeks after getting married and I actually enjoyed it! I would sit one set of exams and as soon as the results would come through I would source the next exam I could find!I specialised in both General Practice and Paediatrics and my happiest work memories will always be those of the littlest patients I looked after. After Freya Lilly arrived I certainly had to cut back but i tool pride in my work and was privileged to look after so many people in local hospitals and after leaving hospitals in my own Practice. This reduced capacity to do what I love is one of the hardest things for me to accept. I am truly blessed to have a great team around me and an amazing friend in Davina who has kept our doors open.
I hope that by trusting the Doctors and treatment I have been offered will offer me a second chance at living the life I want to live. The life I want to live is my old life. All I want is to be able to live a normal, boring, mundane life. I want to know that when I wake up in the morning I will be able to leave the house.I want to dress Freya in the mornings, put pretty bows in her hair, I want to make sandwiches and drive her to school. I want to stand in the school yard with other parents and wave her into class. I want go to work every day. I want to cook a meal. I want to bring Freya for walks or to the playground, I want to do her homework with her. I want to be able to stay up at night until my husband comes home from work and actually have a coversation where I don't fall asleep. I want to live a perfectly normal boring life.
I want to actively participate in life. I am fed up of being a spectator.
Please help send me to Russia so I may hopefully get to experience a normal life, so that I get to be a mother to Freya again and so that I can be a person again instead of a patient.
A heartfelt thanks to all the kind supporters to date. You all amaze me.
6th September 2017
Hi everyone, Laura here again.
I wanted to reach out to all of you tonight after what has been a remarkable 24 hours. I had so many reservations and worries about Archie setting up this page and having people see me like this - exposed, vulnerable and asking for help. I had up now been doing the exact opposite of asking for help. I was hiding from as many people as was humanly possible. This was not good or healthy. I was afraid to let people see me as a patient. I have spent my entire life up to now wanting to look after other people. I would do anything for my patients if I felt it would benefit them. The best years of my life were spent working and studying. Late nights, early mornings and countless overnight calls were part of my life. It has really touched me today to see all the kind comments from patients and parents of patients I have looked after over the past 10 years or so. I always tried to treat patients with the same care and attention I would give my own family. The only people I wasn't looking after properly for the last few years were my own family and myself. Now that I am faced with my own challenges I do not regret any of that time spent caring for others but I do know that it is time to look after myself, for my family and for me. That is why we have asked you all for help.
I quite honestly don't know how to respond to people's generosity since this page and the fundraising links have gone live. I worried would we ever manage to raise even a fraction of our minimum target but seeing how generous people have been to date gives me hope. To all of you who have donated I want to express my sincerest thanks. Every Euro matters. Every Euro gets me closer to what I hope will be a miracle treatment in Russia.
I have thoroughly researched this treatment and despite the risks associated with it I am certain that it is the right choice for me now. I want to have the chance to get better , to have a normal life again. As things are now my weeks are filled with hospital appointments, medications, injections and too many symptoms to list. A day out for us as a family always revolves around hospital appointments. Freya has this game where she guesses which hospital we are visiting on the way up in the car. "The one with the fish pond? The one with the Sylvanian families in the waiting room? The one where you have to walk really far?" She has encyclopaedic knowledge of Dublin Hospitals at this stage. If after seeing the doctors, having the test or the treatment, I'm up to it we may stop for a quick cup of tea on the way home. That's her treat. That's normality for her. She knows all about injections, bloods, IV cannulae, PICC lines, central lines etc etc etc. She will casually drop a reference to the time I caught my long line off something in the car and it bled everywhere or the time the ambulance came to the house. She is great at keeping an eye on all my various bits of medical equipment too. It has only recently struck me that this is not normal for a 5 year old but it's her normal and all she knows. I want her to talk about playgrounds and birthday parties, trampolines and play dates, unicorns and rainbows ... not hospital visits. We can never make plans in advance as they will usually be cancelled and I hate to let her down over and over. My family and friends have been fantastic in helping look after Freya too and in allowing her to be a child. I appreciate all the playdates, sleep overs, drop offs and collections to her dance classes and stage school that she loves so much. Another harsh reality for us is that is Freya is sick, or is even in contact with someone she she has to go stay with her Nanny as if I get sick it is quite likely Ill end up back in hospital. It is very hard to wrap a school child in a bubble to ensure she stays well but we do our best.
The donations you have made will hopefully mean a recovery for me and then we can get some normality back in our lives. I don't think we know what normal is any more but Im looking forward to trying it out!
People have offered to hold fundraising events, big and small - shows, walks, cycles, climbs, quizzes and to donate in lieu of wedding favours. The answer to every offer of help is YES, please and thanks. I cannot believe how generous people are of their time as well as their money. Others have offered to help with Freya and to entertain her for me to go to an appointment or even just to give me time to rest. I am being offered many shoulders to cry on - this is a new concept for me as I am usually the shoulder and the ear not the one being listened to. I have been told Ill be dragged out on little walks when Im up to it and Im to start trying to eat more nutritiously to build myself up for whats ahead. Protein shakes, omelettes, home cooked meals have all been suggested as ways people will help us out. Again, I don't know how I could ever thank people for their kindness.
After a terrible few years my faith in humanity has been restored. People are innately good. Friends, friends of friends, old school mates, family, acquaintances and strangers have extended a helping hand to me and my family. I promise that if I get my treatment and it is successful I will spend the rest of my life paying it back. I will ensure Freya always knows who helped us when we were at rock bottom and that the single greatest trait in a person is kindness. I will make certain that no act of kindness towards us goes unnoticed. It is hard for us to accept help but we need to learn how. Maybe we will be able return the favour some day. I haven't always been the best to attend local events and fundraisers but I think now people know why. I always had tickets bought for fashion shows, concerts and big breakfasts but it wasn't that I didn't want to go, I often couldn't go. Work came first and there was seldom energy left for anything else in the evenings or at weekends.
To all of those who have sent private messages, emails and texts they are all appreciated and I will get back to you all but it might take me a few days.
I promise updates won't always be so lengthy (I always did write epically long English essays in school - maybe during my recovery Ill find time to write that novel I have in me somewhere!!)
I do feel that I had to share my sincerest thanks from the very bottom of my heart. It has been a hugely emotional and exhausting day. Despite it being hard to have everything so public, it has been a good day. There has been a huge weight lifted off my shoulders, one that I have carried around for quite sometime now. Myself and my family can hopefully start planning for a much brighter future.
UPDATE 7th October
Thank you all for your kindness and generosity to date. The support we have received is overwhelming. Our faith in humanity has been restored. We have been on this rollercoaster for the past few years and have been dealt blow after blow. Bad news aplenty and good news scarce on the ground. Because of the help provided by our friends, colleagues, families and even strangers (or friends we have yet to meet, as I prefer to call them!) we are now in a position where we can consider treatment in other hospitals around the world. Currently we are hopeful that Fred Hutch in Seattle may be a contender. They are currently reviewing my case there. This centre of excellence may be better equipped to deal with the complexity of my illness. In light of these developments it is vital that we continue to fundraise despite the initial target being reached as medical treatment in America is much more expensive than other countries.
Words cannot express our gratitude to each and every person who has donated. Every donation is gratefully received. Thanks to those who have held fundraisers and good luck to those who's fundraisers have yet to take place. We will post updates regarding the various hospitals we are in contact with worldwide as we learn more.
- Órla Cleary
- Ann Kelly
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