Henry has profound and multiple physical disabilities including scoliosis, epilepsy, movement disorders and muscle weakness. This campaign will help fund vital therapy and equipment for his wellbeing.
Henry is aged 4 from Beckenham. He was born on the morning of Christmas Day in 2021. Strangely when he was born he did not cry and unfortunately within minutes of being alive he started to have epileptic seizures.
Our dream of having our first child together suddenly turned into a nightmare when baby Henry was whisked away to NICU where doctors could not find out why he was so unwell. Four months later and over a month and a half in hospital, Henry was diagnosed with an ultra rare genetic condition called CASK. We were told his variant was so rare and extreme that he would be unlikely to live to his first birthday. Our lives fell apart and we spent the next few months trying to make memories with our baby alongside being admitted to hospital a further four times for chest infections.
Fast forward 4.5 years and Henry is defying the odds. However, he has daily struggles with seizures and painful muscle spasms. His very limited mobility has meant that he has severe scoliosis which will need surgery in coming years. He has had open heart surgery to fix a huge hole in his heart which doctors felt was a huge risk. Spinal surgery will be a greater risk and fills us with absolute fear.
This campaign will support Henry’s muscular health, with the aim to slow down the curve of his spine, enable him to move more and delay treatment until he is older and stronger. This will require hours of therapy and specialist equipment which we are unable to fund ourselves. Since we provide most of Henry’s care we have had to change our jobs and our household income is now much reduced. Henry is often admitted to hospital (27 times so far!) and again this means we have to reduce our work, affecting our income and unfortunately hospital life is expensive.
If you are able to support our son in any small way, Just4Children would be extremely grateful. All of Henry’s therapy is shared publicly via our Instagram page and so you can follow his journey to see the impact your generosity is making too.
Thank you!
