Rare Disease Has Reduced 9-Year-Old Ayaan To Just Skin And Bones, He Needs Your Help To Live | Milaap

Rare Disease Has Reduced 9-Year-Old Ayaan To Just Skin And Bones, He Needs Your Help To Live

Ever since Ayaan was 7 months old pain has been a constant companion. Not a single day goes by without him screaming that his stomach hurts. He has spent his childhood indoors, most of the time unable to move because of the pain.


“...and the pain intensifies; it is unbearable for my child. For almost nine years, I have run from one hospital to another for a cure but it was only a year ago, after one of the tests, that his disease was finally diagnosed.” - Farheen Sultana, mother

Only one of the most expensive drugs in the world can save Ayaan’s life

Ayaan has an extremely rare disease called 'Complement Hyperactivation, Angiopathic Thrombosis, and Protein-losing Enteropathy', also known as CHAPLE Syndrome. Doctors have told his parents that Ayaan is one of the few people in the world that suffers from this condition. This is an extremely rare life-threatening disease where protein levels go down and the body is vulnerable to multiple infections.

Only Eculizumab, one of the most expensive drugs in the world, can save Ayaan’s life and it needs to be administered for 2 years. The drug would have cost INR 25 lakh each month, a sum his parents could never afford. Luckily a US-based drug company offered to sponsor Ayaan's drug costs. But just when they were about to travel abroad to save Ayaan, the pandemic broke out and cancelled all their plans.

Now they have no other option but to try to import the drugs here. They tried to delay treatment, but cannot anymore.
 During one of the hospital visits in Delhi, he went to India Gate to celebrate independence day

It has broken my son mentally and physically

"We had the chance to beat this disease and end his life long-suffering. But it was snatched away from him due to this coronavirus pandemic! For the past year, we have been trying to do everything in our power to somehow arrange funds to afford that medicine here in India, but we have failed. His condition has gotten worse, to the point that I am scared to even look at him. This disease has reduced him to just skin and bones; and it's not just his body that this disease has affected, my child has become mentally fragile. He is constantly scared and finds it difficult to sleep. Even though he was sick all these years, he stayed strong. But now, it's like he is giving up and it's killing me to see him like this." - Tajuddin, father

(L) Ayaan a year back, (R) Ayaan at present

Only you can save this little boy and end his misery

Ayaan's father, Tajuddin, works as a postman. His salary would never have been enough to keep his son alive for this long if it wasn't for his relatives and friends who helped him through these difficult times. They managed, with great difficulty, for nine long years but affording this treatment now is way beyond their capabilities.

Last year, Tajjudin was with his son through every step of his treatment. But now, he is forced to work because every rupee is so important to them. They need to get Ayaan a few emergency doses of the medicine of they risk losing him forever.

“These injections are the only way to save him but I can’t afford them. What else can I do? I am just a postman!”

The treatment cannot be delayed anymore. Ayaan needs at least 6 doses of the drug at the earliest. With each dose costing ~INR 3 lakhs, they are in dire need of INR 20 Lakhs, but they cannot afford it alone. They have spent their live's savings so far to keep their son alive and are now neck-deep in debts. 

A picture from last year's treatment cycle

You are their only hope. Your generous contribution can save this little child from never-ending pain and give him a chance at life.
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Patient Ayaan is 8 years old, living in Hyderabad, Telangana
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Being treated by Dr. Prashant Bachina in RAINBOW CHILDREN HOSPITAL, Hyderabad, Telangana

Receiving treatment for Complement Hyperactivation, angiopathic thrombosis and Protein Losing Enteropathy

Click here to know more about Ayaan
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