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Alice's broken heart

€26,390 of €30,000 goal

Raised by 755 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. €30,000

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 that it would be approx. €30,000 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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48 hours after her operation and Alice is continuing her recovery here in Frankfurt. Her system is under extra pressure as a result of the procedure and this morning the staff were very concerned about her rate of breathing. To try and help Alice she has been put on high flow (air under pressure to make breathing easier) as well as extra diuretics and midazolam to help keep her sedated. She's now sleeping while we anxiously wait and see how she responds.

Keep fighting, little rabbit.
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Just a quick update to say that Alice got through the surgery okay. They didn't have to do the open heart variety so her recovery should be shorter. Now we wait and see how her heart responds to the banding. Her cardiologist feels that a heart valve may need a surgery in the future, depending on how she responds to this procedure. This might get done here and will mean we'll be staying in Germany a bit longer. But we'll wait and see about that. Right now she's doing well and drinking a little bit from a bottle for mummy!
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We all made it to Frankfurt yesterday with no problems! Alice and Majella arrived with the help of the Irish Air Corps, Jan-Bart arrived via Ryanair!

The surgery is scheduled for 10am tomorrow (21st June) and we'll have to wait and see afterwards. All going well we should be back on our way to Ireland Friday next week.

Attached is a little live video Jan-Bart made in the hotel room yesterday.
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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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€26,390 of €30,000 goal

Raised by 755 people in 4 months
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