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“He is so weak that I fear I might break him if I hold his hand like a normal father does - hold him while he walks or while he rides a cycle. I can never do such things...How do I show my love to him without hurting him?” - Arif, father,holding back his tears
"There is no cure, all you can do is spend time with him while you still can..."
Abram had medical conditions by birth but they were never this major. Calcium deficiency and slow growth, but when he was 7 months old, he had facial palsy and it all led to Osteopetrosis, a bone disease and also rarest of diseases with no cure. Even the slightest bumps and minor fall can risk of bone fracture.
“The right side of his face, it...it stopped responding. He stopped blinking, if he cried, tears would fall only from one eye and his smile, his beautiful smile...it was gone. We were so scared, we thought there was some problem with his nerves, but it was much bigger than that.”- Shamanaz, mother
“They said,slowly he will lose his vision, his ability to hear, he will bleed a lot and worst of all, his bones may crumble like biscuits even at the slightest bump. We lost all hopes after listening to every other doctor say that he might not live long and it is better to keep him happy than to make him go through all the pain.”- Shamanaz
For 2 years these parents tried their best to keep him safe. They avoided all the things that can cause even a slightest harm to him. Fortunately Abram didn’t lose his ability to see and hear. If he is treated on time, this little child can be saved from all of the pain and misery and now they have hope.
A ray of hope after 2 years of suffering - the only chance to save Abram
Atif met a person online whose daughter also had the same symptoms and diagnosis. A bone marrow transplant saved her life. This was the only good news and the first ray of hope they got in 2 long years of hardship.
“We were so happy when the doctors said that it was possible to do the bone marrow transplant but the cost... it will cost us 27 lakhs. I don’t even earn enough to keep up with the medical expenses of my child, how will I afford this? I don’t want to lose the only chance to save my child.” - Arif
He bleeds every night from his mouth, even his teeth are fragile like glass
The parents keep a 24X7 watch on Abram. They fear that something might happen to him while they are asleep, so they keep an alarm for every hour to check on him. Since little Abram turned 2, there has not been a day when he did not bleed. Everyday his health is deteriorating.
“We can’t rush him to a doctor every time it happens so we learnt to do his first aid and it is so, so painful looking at him bleed all from his mouth and nose. He can’t talk, he can’t eat anything, can’t drink anything hot...anything can make him bleed. The fear of losing him is constantly there, all the time."
They say children look cute when they smile after a broken tooth but these parents can’t be happy about that. Initially Abram did have teeth but they were also fragile like a glass and eventually broke.
Abram is their only child and fortunately despite not having a sibling, father is a fully matched donor. Everything is lining up for little Abram but with no funds in hand, these parents will lose him. You are their only hope. Your help can save this child.
