Meet Sam, a wonderful, happy and incredibly brave little boy whohas been through more in his 6 years than most will ever have to face. He is myson. And my hero.
Samsbrain didn't form correctly during pregnancy. We had no idea anything was wronguntil our tiny baby suffered a massive seizure at 14 weeks of age - the seizures kept on coming, each one more aggressive than the last and when tests showed our boy had a catastrophic seizure disorder of infancy called InfantileSpasms our world fell apart. Since then Sam has had never had a day when he hasn't suffered seizures.. at his worst he suffered hundreds of seizures daily.The seizures devastated his development and left him unable to sit unaided, walk or talk. Sam uses a wheelchair full time with an oxygen cylinder and suction machine carried with him in case of emergencies, and is 100% dependant on us for all his needs, be it personal care or playing with his favourite toys. Sam's seizures are drug-resistant, despite three anti-seizure medications and a vagus nerve stimulator (VNS) which has significantly helped reduce his seizures he still experiences around 6-20 seizures every day of his life.
Sams list of medical issues is enormous, in addition to the life-threatening seizures he has very low muscle tone, visual impairment and is no longer able to eat orally, so is fed through a PEG tube directly into his tummy. Sam needs specialist equipment, adapted toys and regular specialist therapy to help him live life to the full, the majority of which we have to fundraise for. Despite all of this he is one of the happiest, most loving children you could ever hope to meet.
Two years ago, we moved to a home that would be better suited to Sams needs. Sam has never had his own bedroom and currently shares a room with us so we are close by to help when seizures hit at night. As a family we all sleep in the sitting/dining room, as there are only two rooms that Sam can access with his wheelchair (the ‘bedroom’ and front room). Sam is unable to access the garden due to steep steps, and has to be given a bed-bath during the week as its becoming increasingly difficult and unsafe to get him upstairs to the bathroom. He needs a fully-adapted bedroom and wetroom with hoisting to allow us to safely move him, and all doors downstairs need widening to allow his wheelchair to pass through easily. In short, remodel the entire downstairs of our home… basically, this is our own DIY S.O.S.
And thats where you can make a massive difference. Please help us to raise the money Sam needs; it won't change the World, but for one very brave little boy, it'll mean everything. Thank you for reading, Carolyn and Sam.
7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.