Raising Rupert with Noonan's and his life limiting heart

Michaela King is organizing this fundraiser.

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Hi everyone! I'm Rupert's mum Kayla, and I really need your help.

my Rupert has Noonan syndrome (PTPN11). Noonan's is more common than you may know - it effects 2000 to 2500 people worldwide, but people are often not diagnosed till later in life via health complications or passing the gene to their children who end up with more moderate noonans characteristics , and that's when people may get diagnosed. A person with Noonan's syndrome has a 50% chance of passing the gene mutation on!

children and babies who get diagnosed are usually done so due to heart complications that relate to the genetic syndrome!

It affect's multiple people in a variation of ways, from heart conditions to emotional needs and mental health struggles, ASD, ADHD, learning & developmental needs, height, weight, multi skeletal pain, hearing and eyesight issues, and can have blood clotting disorders leading to leukemia diagnosis'. It also effects their facial appearance - so there are millions of children out there that look like Rupert which is pretty cool! It will affect their stature, hair and normally Noonans have bright beautiful blue eyes! The list can go on, but from what I gather in such a short time of being a Noonan's mum are that these children are all unique and just so brave and special!

Rupert was born with a dodgy heart, I realised straight away he looked different and along came my journey of being a solo parent with a child who has Noonan's! It's so common but still most medical professionals don't know about Noonan's so advocating as a parent is vital for our noonan kids but it can be extremely stressful and some times can be very upsetting when you feel you aren't being heard!

Now for the more serious stuff -

Simplified, Rupert has heart disease all over his heart, he has pulmonary stenosis and both are severe. He has other bits and bobs but these are the most significant.

I was told in October 2023 when he was 7 months he needed open heart surgery in Glasgow.

within months Rupert's heart got drastically thicker and Glasgow felt Rupert's best chance is GOSH in London for the surgery.

This week I was made aware of how poorly Rupert is.

Rupert only has a 50% chance of survival.

The risk is they believe Rupert will struggle with coming off bypass after surgery. If he does he will then go onto a heart Ecmo machine , which is also 50% survival and has a higher risk of stroke and brain damage. If Rupert isn't able to recover on Ecmo then discussions will be had for end of life support. Due to his Noonan's and significant heart problems Rupert isn't eligible for a heart transplant.

He is life limiting without surgery, and they won't know till after the operation if Rupert will still be life limiting.

The anaesthetist made it clear that they are very nervous to operate on Rupert - but it's the only chance he has of living.

So that's the crux of it, my beautiful baby at 14 months old may pass away during surgery, and if not, may have significant brain damage and there's a high likelihood he will be life limiting after.

We have already journeyed from Edinburgh to GOSH for surgery but it was cancelled once there, due to lack of ICU cots ( and that's ok, because other poorly babies needed it more)

We are due back on the 17th June 2024 for surgery on the 19th June if there's no cancellation.

so what do Rupert and I need?

we live in temp acomodation due to housing issues and I no longer am employed due to Rupert's needs being a priority. Rupert couldnt get insured because of his genetic syndrome. We have very little money, and now I know how poorly he is, I need funds more than ever.

whether 20p, £1 or anything more it will help with the following :

Any costs for funerals that may not be funded if that time comes
any private care to support Rupert if he ends up with a brain injury
any funds to help with educational support when the time comes.
I'm from Somerset in England, and I want to take my baby home. whatever version that looks like, so to help go back to the good old cider country ( to hopefully raise him) would be an absoloute dream.
help creating a stable environment for Rupert to be raised in whilst having so many needs
Any other additional costs in hospital, whether this stay or a stay in the near future for him.
any funds to help look at any abroad medical care depending on where this journey takes us.
help pre surgery with bills, debt incurred due to costs in hospital (because we all know how expensive London sandwiches can be, and how little funding there is little funding for parents and families)

now I may raise the bar of the go fund me at times because any little helps but my promise to you is - any money I don't need will go towards the Noonan association to help create more awareness and support for families.

the truth is, I'm scared. I wanted to be a mum since I was 15 and now I may loose my baby. He is everything to me, my entire universe this journey is incredibly hard.

but i cannot express the gratitude that you've managed to read this far. And if you are able to give us a donation and a share I cannot thank you enough for helping me raise my rupert.

Ruperts Mum

❤️