Please meet Ismail Ali, a lovely, energetic, inquisitive four year old boy. Everything every other four year old boy is. Except from one thing.
Ismail has a life limiting and extremely rare liver disease meaning he is house bound for 20 hours a day.
Ismail Ali has a little known liver disease called a Crigler-Najjar, of which there are two types. Ismail has type 1, the most severe case.
A build up of the toxic form of bilirubin builds up in the blood causing the visible symptoms of jaundice (orange skin) and the liver struggles to (or is completely incapable) of breaking this bilirubin down and so it remains in the blood. When bilirubin levels get too high the child is at risk of developing Kernicterus - brain damage, and this can cause death in the child.
CN - Type 1 is so rare, in fact less that 1 in ONE MILLION live births are affected.
Ismail has round the clock care and has to spend 20 hours a day under phototherapy lights, meaning he is missing out on the normal things a bubbly and active four and a half year old should be experiencing. He attends school for two hours at a time infrequently and is expected to remain in bed almost all day - an impossible task for an adult let alone a child with copious amounts of energy and enthusiasm.
Ismail comes from a wonderful, kind and hard working family and is the youngest of his siblings. His mother is a hardworking individual within her community and a well regarded member of her community. She continues to be present at work and help mothers and families in her community before returning home to care for Ismail, feeding him (due to the expensive equipment Ismail has to remain on he cannot feed himself due to the risk of damaging the machinery and lighting) maintaining his medication and providing him with the love and reassurance he needs.
Ismail's condition is closely monitored for signs of the brain damage that could end his tiny life, and with regular visits and trips to various hospitals the family have very little time for themselves and can only be away from the house for 2 hours at a time before Ismail needs to return to his therapy equipment.
The family living room is the only room within the home that could possibly house the large equipment and so the family have no communal area within which they can relax and be a family together. Ismail and his family would benefit exponentially from an extension, designed by someone with medical knowledge, that could provide Ismail with his own treatment room, large enough to house his medical equipment, giving the family back their living space and kitchen.
On top of this a home tutor to sit with Ismail and home school him so he can stay in line with his peers and age group in his education, as currently attending school is completely impossible for Ismail, putting his development at risk and behind children of his age.
I know this family well, and no one is more deserving of this life changing opportunity. To see such a tiny boy confined to sitting on a hard bed streaming constant bright lights at his body for 20 hours per day, meaning he has only had a fraction of the life experiences other children his age have had, breaks my heart.
The extension on his family home would provide the space his phototherapy equipment needs, along with having basic amenities within reach of the bed he has to remain in for such a large amount of his small life. The tutor would provide the learning and education other children his age are also receiving, without putting his life at risk by attending school and being away from his lights.
Please donate a small amount, every penny counts, to help us achieve the target and completely change this family and extend this young child's life. From the bottom of my heart I can't express enough how Ismail and his family are so deserving of this opportunity.
If you can find a spare amount to donate then THANK YOU SO MUCH!! You will change Ismail's life!!