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Alice's broken heart

€29,760 of €30,000 goal

Raised by 849 people in 6 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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Alice got seriously ill in the last week as we got closer to coming off the milrinone. She retained fluid, couldn't breathe well, had increased vomiting, got constipated and her heart rate increased to 155 awake just laying in her cot.

She's back to her original dose of milrinone for a few days now but her blood tests in relation to her heart are not normal yet. We were close to having to go to ICU to stabilise her. Although she appears well we need the blood tests to improve and she'll have another echo tomorrow.

The last echo showed her heart is now beating weaker than it was a month ago.

It feels to us now more than ever, her only option is a new heart and we hope she can stay well enough, long enough to get that.

The Palliative Care Team has been included in her care. The main reason they've been involved is to keep her comfortable, not to provide the End of Life care they're usually known for. They have included a few anti-nausea medications to reduce her vomiting which have been very effective.

As a result of all this and the fact that other heart medications have also been increased means that Alice is back to her usual smiley self. She's smiling, active, kicking, laughing and playful. We've reintroduced little bits of puree and she really enjoys messing with it. Her Physiotherapy is going well and she continues to get better muscle control.

In the meantime Majella and I will be going to Great Ormond Street Hospital on the 27th to meet the heart failure/heart failure team and see what they feel they can do for her.

Thank you for your continued support and donations.

Jan-Bart & Majella
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Just a quick update! Alice has had a rough week with lots of vomiting. This all seemed sudden and after doing some investigating we found out her anti nausea medication was stopped. They didn't tell us this and also the same week they started weening her Milnirone (strong heart medication given via continuous infusion 24 hours a day) and as a result we can't figure out if it's her heart or not. The team have since restarted the anti nausea medication via a new cannula in her foot as she could not even keep that in at some stage. So we reach today confused and waiting on the results of an echo to check her heart function. Fingers crossed it's ok

We just wanted to include a picture of the family dog Tasha who sadly crossed the rainbow bridge last week. She was 16 and half years old and our first baby. There's been a lot of grief this year and we don't want anymore! 

On the 26th of this month we'll (without Alice)meet with the team in Great Ormond Street Hospital London to learn all about how transplant works and what will happen if Alice has to go there either for a transplant or other care such as VAD or ECMO should that situation arise. Again the HSE don't fund any of this trip so thank you from the bottom of our hearts, your donations are keeping us going and keeping us together.

Jan-Bart and Majella
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Alice recently turned 7 months! Big achievement for her given what's she's been through.

We had a team meeting last week and we chatted through all the options for Alice. Yes, they are requesting she be put on the transplant list. All her information is being sent to Great Ormond Street hospital and we'll see what they think.

Her future is very uncertain but here's a few ways it could go.

1) she slowly weens off milnirone it a continuous infusion through her Broviac (central line) and we go home and see can she stay well and the PA band helps her hang onto her on heart for months maybe years.

2) she deteriorates goes back on milrinone and is stabilized but needs hospitalization.

3) similar to 2 but we need to go to Great Ormond Street hospital for VAD (ventricular assist device) to be surgically attached to her heart to help it pump the blood around her body. That would mean Mom and Alice living there waiting on a heart.

4) is sudden death which she is of high risk of.

And as shown in the past she can jump from one to the other in a (literal) heart beat.

The odds are stacked against her now we know she has a mutated gene that most likely caused her heart to be so so weak.

So we wait and see again what can Alice's heart cope with

In the mean time Alice is being minded by the wonderful nurses and cardiology team here in Crumlin. She continues to develop, strengthen and grow with the help of the physiotherapist, speech & language therapist, dietician and occupational therapist. Mum and dad are helped by a clinical psychologist and social worker. And
all are watched over by our Clinical Nurse Specialist. We are very grateful to all.

Jan-Bart and Majella
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Tuesday July 30th marked 4 weeks since Alice's surgery in Gießen and she's recovering well. Despite all the great work they did in Germany her heart function remains the same. For this reason it's likely she'll go on the transplant list.

So this will mean a trip to Great Ormond Street hospital in a few weeks and learn all about that process. We have a meeting with her team here in Dublin tomorrow to discuss options for her and how to proceed forward.

We won't know if the PA banding is working until she grows a bit more as it is currently a bit loose to give her heart, especially the right side, time to recover. It has recovered a little bit but the last three echos were the same. This isn't a bad thing either as she isn't getting worse!

So once again we sit here waiting and hoping that she can improve without the need for a new heart. In the last few days we've been able to take Alice for short walks in her buggy and she's been playing in a special chair and on a play mat as part of her physiotherapy treatment to regain some of the muscle strength she has lost over the past two months.

Jan-Bart is back at work again for the last two weeks for three days a week and trying to mind the house and the cats and dog that still live there. Even though we are apart a few days a week it would be a lot more if it wasn't for your help.

We are eternally grateful to everyone for all the support we've received over the past few months. And not just financial support through this Gofundme. Many amazing and kind things have been done for us.

Thanks again,

Jan-Bart and Majella
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€29,760 of €30,000 goal

Raised by 849 people in 6 months
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