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Alice's broken heart

€24,990 of €30,000 goal

Raised by 703 people in 4 months
6 weeks old Alice’s very poorly heart

Alice and her family are in desperate need of your help as they face a very uncertain future made even more unbearable through spiralling expenses. Please take the time to read Alice’s story and help if you are able. Lets keep this family together!

Target Amount. €20,000

This is for Alice and her Mummy and Daddy to be able to remain together with Alice and be able to afford to live in Dublin away from their home town of Cork and with imminent possibility of leaving Ireland for Great Ormond Street Hospital London.

It will cover daily spending, flights, things for Alice, living expenses for London and Ireland. We estimate for 6 months that would be approx. €20,000 minimum.

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Our Story

Alice Aurora Spang was born on the 4th of January 2019. She was born a healthy beautiful baby at a healthy weight of 8lbs 1oz. Her devoted parents were overjoyed. Majella and Jan-Bart had wished for a baby for some time and Alice is a precious gift not only to her parents but to their wider family.

At 4 weeks old little Alice developed breathing problems her adoring parents were very quick to act recognising that something was wrong with their usually very responsive and active daughter. Alice was rushed to hospital near their home in County Cork Ireland. The staff immediately recognised that Alice’s heart was failing and set about getting Alice transferred without delay to the Paediatric Intensive Care Unit at Our Lady of Lourdes Children’s Hospital in Crumlin Dublin. Alice was ventilated and remains so at this point as she is still unable to maintain her own airways. Alice continues to be unable to sustain her own life and without extensive support managed by the is care of the cardiac team in Dublin.

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It is undecided at this time if Alice will need a new heart or if she can be placed on the Heart transplant list. This is very much dependant on her condition and where the best treatment is moving forward. Great Ormond Street Hospital in London are working holistically with Dublin to care for Alice’s needs, supporting her to remain stable with every intervention available to them.

Should Alice's condition deteriorate she will be transferred from Dublin to Great Ormond Street Hospital in London so she can receive the specialist care with the heart transplant team.

Majella and Jan-Bart are devastated and scared for the future. Majella and Jan-Bart would go to the ends of the earth for their daughter, however uprooting their whole lives and moving from their home town of Cork currently to Dublin a distance of 170 miles and even the possibility of moving to London (530 miles) for an indefinite period of time is not only heart breaking and stressful leaving their family and support network, employment and their home behind but also at one of the most difficult and challenging times of their lives.

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Majella and Jan-bart have a very limited amount of resources this is an additional stress and cause of anxiety at a time when their focus should be and needs to be wholly on their beautiful daughter.

The impact of moving to an area that they do not know hundreds of miles away from home with their very poorly daughter Alice and without the necessary finances is very bleak.

This is why we have created a crowd funding page to try and do the little we can to support this beautiful family through this really difficult time. With this support the family will be able to ensure that their house hold bills, mortgage and the extra expenses of at least one parent living in Dublin and possibly London are met, this unfortunately has already incurred a lot of unexpected costs and spiralling debt.

Any funds not required will be donated to the hospital(s) who have so expertly cared for Alice and her parents.

No family should be apart at a time when they need to take strength from one another and to both be able to share the precious time they have with their daughter Alice as the future is not given. We all live with hope and love in our hearts.

Please help us to achieve this target so that we can together ensure that Majella and Jan-Barts focus can remain on their beautiful daughter, showering her with love and everything that she may need.

Thank you,

Majella, Jan-Bart and Alice

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Our Alice continues to take us further into her Wonderland by taking us on a trip to Frankfurt next week! If all goes well we'll be in Frankfurt for about a week but there's a potential that we'll be there for much longer.

She's having surgery to fit bands on her pulmonary arteries in the hope it'll help her heart pump better and shrink down to a more normal size. This is the last thing we can do to try and let Alice keep her own heart. It's very risky to do this but we feel like it's our last hope. There is a chance Alice could die in Germany but everyone is of the opinion that this won't happen.

If the surgery is as successful as they think it will be it could give Alice a closer to normal heart function which will allow her to grow and develop like a healthy child should. There's even a chance she may not need a heart transplant.

The heart transplant route is not a road we want to go on as it's pretty final and fill of risk. If she was lucky enough to receive a doner heart it would only give her a limited lifespan of about 17 years or so. Her body will slowly reject it. She could receive a second heart but the same scenario arises. (Getting a second transplant is rare) Either way in that scenario we are going to watch our girl slowly die in our lifetime.

This is her last and best hope. We are hoping she makes it through the surgery. We are hoping it'll be successful and we are hoping she gets to live a long life.

Please keep the donations coming. They've really helped us and we will be needing them now.

And as always thank you so much for your support so far.

Jan-Bart and Majella
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Things are changing fast here in Dublin since our last update.

It looks like we are off to Germany in a few weeks for a surgery on Alice's heart. A German cardiologist was contacted when she first got sick in February and his advise and treatment plan was used and got Alice of the ventilator and out of ICU. This surgery was talked about then but Alice was improving so fast it wasn't worth the risk. It was decided to give her time to see what her heart could cope with. Now a few months down the line it's clear as she grows her heart is very weak and possibly won't be able to sustain her as she grows and she'll need a transplant.

But this surgery could offer a potential alternative. It could increase her heart function to enable her to grow and possibly never need a heart transplant. Or it could delay transplant for her. It could also kill her as surgery is risky in anyone is extremely risky for anyone with a heart condition. 

This is why we are having it done in Germany and this cardiologist has been doing them for 8-9 years now. It's the safest place for her as it's a transplant centre and can do more to help her should she deteriorate after surgery. This includes an emergency transplant listing and bypass if needed. The UK hospitals wouldn't take the risk in doing this surgery and deemed it best she go to where the experienced people are.  If you would like to know more about this surgery look here
https://heart.bmj.com/content/103/4/262

We are applying for funding from the HSE here and we are hopefull it'll be approved but if not we'll have to pay ourselves. If they do pay for it, they'll only pay for Alice's treatment and not our flights or accommodation. We don't know how long we'll be in Germany it all depends on how the surgery goes. If this doesn't work there's nothing else that can help her, only going on the transplant list and hoping a baby heart becomes available. It would be a miracle of she got a heart in 6 months which is the window we are looking at. They don't expect her to get past another 6 months without intervention and may need to be in hospital until (or if) a heart becomes available

Alice continues to improve here in Dublin thanks to the care by the nurses and the cardiology team. She's starting to become her happy smily self again. She'll be getting neurophysiotherapy to try and strengthen her up. The past 3 weeks caused her to have pretty weak head and neck control but when she's fully weaned off the sedation medication this should improve. She's gaining weight and had started slowly drinking some milk from a bottle again.

Finally we would like to give a big thanks to Chris Ramsey, James Coates and Jonathan Porterfield for raising awareness and funds for this Gofundme with their sustainable race. And a thank you to all who've donated in response. It's been very heart warming for us to see the donations, messages of support and all the social media sharing.

Thank you all for your continued support.

Jan-Bart and Majella
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In the week since our last update Alice has continued her slow recovery. But not without a few setbacks. She's developed a urinary tract infection, gone through morphine withdrawals and started properly teething. This made for a pretty uncomfortable week. But she's still in the intensive care as there are currently no beds in the Children's Heart Center. When she gets a bed it's expected that she will be there for the foreseeable future.

While all this was going on the cardiology team has started the official process of trying to get Alice on the heart transplant list in London. This is expected to take a few weeks. There is also the possibility of a surgery in Germany. This surgery could help her heart function better and it's a option we're pursuing. But the first priority is getting her on the transplant list.

But at the moment Alice is starting to feel better as her beautiful smile is making a return. Yesterday she enjoyed her first game of peekaboo which made both of us cry.

Thank you all for your donations and messages of support. This really helped us a lot. Please keep them coming. We'll keep you all updated.

Jan-Bart and Majella
+ Read More
Alice is off the ventilator again today and appears to be stable with the help of some arrhythmia medication. We're hoping to get some more information tomorrow but we know we're on a different path now.

The team will be contacting the heart failure/transplant team in Great Ormond Street Hospital tomorrow to ask their opinion on potentially putting Alice on the transplant list. This will no doubt take time and involve lots of further tests which we hope Alice is able for.

Our immediate focus is to try and get our little girl back to the Children's Heart Center and back home. We hope there will be no further surprises.

We both feel a little less optimistic but we hope that Alice keeps proving everyone wrong.

Thank you all for the continued support. The donations have allowed us to stay together as a family and create some wonderful memories. We hope to make many more!
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€24,990 of €30,000 goal

Raised by 703 people in 4 months
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