Hi my name is Amy and I am mummy to an amazing little boy called Finn.

Finn was born at 33 weeks on 29/12/2022 by emergency c section, we soon found out that he had a heart murmur which we were referred to Leeds General infirmary for. Following multiple ECG and echograms we were told that Finn had Williams syndrome.

Williams syndrome affects 1 in 20,000 in the UK and is a rare genetic disorder where part of chromosome 7 is deleted, this in turn can have problems such as learning disabilities, behaviour issues and heart conditions to name a few.

Finn was diagnosed at 9 months old with pulmonary stenosis and supra aeotic stenosis which means these arteries on each side of his heart were too narrow. To fix this he required open heart surgery to remove the narrowing and patch the arteries back together using cow skin.

In July of 2025 Finn underwent a 6 and half hour surgery to correct the narrowings. Initially the surgery went well and Finn was making fantastic progress. But unfortunately later the same even we received the phone call no parent should, Finn had gone into cardiac arrest and was extremely ill. Finn had a vomit of old blood that had been sat in his stomach, whilst vomiting he had asperated meaning this had gone into his lungs. Doctors and nurses fought for 90 minutes doing both external and internal CPR along side 22 rounds of adrenaline to be able to get Finn onto life support.

Finn remained critical for a few days and then was gradually weened off the life support but in my gut I knew something wasn't right. He was paralysed down the left hand side of his body and couldn't even lift his own head. After further investigation it was found Finn had suffered a stroke and a Hypoxic ischaemic brain injury due to the amount of time he was without oxygen for.

Following this he was transferred to Sheffield children's for intense neurological rehabilitation. After weeks of hell Finn was finally discharged home to start his recovery. Unfortunately this was short lived and he was re admitted to hospital a few days later as an abscess had developed under his chest wound.

He too was deemed to have a unsafe swallow due to a delayed cough so had to be fed via a NG tube. One day Finn pulled out his NG tube but professionals at Barnsley were unable to re pass a new tube so we were sent again to Sheffield Children's hospital.

He had an x ray completed which showed the reason they were unable to pass a tube was due to a osophegal stricture, the oesophagus had suffered an injury during the open heart surgery and had completely closed due to scar tissue building up. This now gave us answers as to why he had blood in his stomach that night and also as to why he could no longer eat or drink orally. Finn was then fitted with a gastronomy peg.

Since then we have had a number of appointments and further surgeries to try and re open his oesophagus and this is still a work in progress. His next surgery will be on Christmas eve 2025.

To share his story and journey to recovery I set up a tiktok page @finnscharm22, the account grew and people have become aware of Finn's fight at just 2 years old.

Given the awful experience we had at Leeds and the failings Finn has endured above along with a wire being left in his chest also I really don't want to return to Leeds for the next surgery, so when the time comes I will be looking at other hospitals that specialise in cardiac surgery and move his treatment to their however this may mean travelling a fair distance from home.

Even after everything he has been through he does it all with a smile on his face and he is such a joy to be around. He lights up any room he is in and loves to be around people.

I have been asked multiple times by his following to set up a go fund me page so they can donate to Finn, this will be used to help fund a safe space bed for Finn to remain safe! As he has been declined twice for funding

Thank you for taking the time to read Finns story, even if it just spreads awareness I'm happy.