This 6-Year-Old With A Rare Disease Is Terrified That She | Milaap
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This 6-Year-Old With A Rare Disease Is Terrified That She Will Not Leave The Hospital Alive

‘Maa, Why is everyone staring at me? Do I look so different? Will I ever be able to fit into my clothes again?’ asks 6-year-old Suhana. Ruksana has been ignoring comments from every neighbor and passerby on how obese her child is. ‘They say, maybe she should go on a diet. The truth is, she can hardly eat. She is swollen, not fat. She is in pain, and she may die of it,’ says the distraught mother.

She's unable to recognize herself and struggles when people ridicule the way she looks

‘It was too late to save Suhana’s brother; she may have a chance’ 

The parents were grieving over the unexplained loss of their 4-year-old son when Suhana's symptoms got worse. She began  having recurrent fevers when she was 1. It was nothing less than 105 degrees. Then came a cough, nausea, and rashes. Comparing symptoms to their son's, these parents realized it was not normal.  Even after visiting several hospitals, they were unable to find the cause.

“Finally, luck brought us to the right doctor. Suhana has a rare genetic disease. Doctors said her organs are damaged. Her skin has bruises all over and it may just split open if she moves. She has breathing trouble too, we can't see her suffer so much at this age. My first born daughter is healthy so we never thought it would affect Suhana." - Mehboob, father.

Suhana before she was diagnosed

The cells meant to protect her are destroying her

Suhana has Hemophagocytic lymphohistiocytosis (HLH) as a result of gene mutations. Her body is producing too many immune cells, and instead of fighting infection, they are causing inflammation and damaging her body. Suhanas liver, spleen, bone marrow and brain have been affected. Her parents can barely comprehend what is happening to her. They know that a stem cell transplant can save their baby girl.

“The doctor said babies with this disease will start showing symptoms in the first few months of their life. So, those fevers I shrugged off as something normal, were signs I missed out of my own ignorance. It is like, the police who are meant to protect us, start shooting us. That is what is happening to my daughter's body.” - Mehboob, Father.

Within months, the disease changed her

'Will I get operated too? Will I die? Please don't leave me Maa'

There are many children in Suhana's ward who are suffering from life-threatening diseases. Suhana never talks to anyone or play with them fearing that they ridicule the way she looks. One day, she saw a child suffering from cancer taken into surgery. She was screaming in pain. Suhana somehow discovered that the child passed away. Since then, Suhana is afraid of the hospital, and fears she may never go home alive.

"I cannot bear to hear her talking about death. She keeps crying in pain. If we hit our toe and get a swelling, the pain is unbearable. Her whole body feels like she was stung by bees. Imagine what she is going through." - Ruksana.

She begs her parents to take her home

'I earn Rs 200 per day, it is not even enough to buy food'

Suhana's father Mehboob Shaik is an agricultural laborer in Parbhani district, Maharashtra. He is running back and forth to hospital and home and not able to be regular at work. He has been borrowing money from everyone to buy food and medicines. The poor parents skip meals, save every rupee but nothing seems to be enough for the transplant.

Today, Suhana is terrified that she will die

"I need 16,50,000 for the transplant. I cannot save or earn this much money even if I work for the next 20 years. Suhana may not even have 20 days left. If I don’t find help, I have no other choice but to take her home and watch her die helplessly."

There's nothing worse than to live in the fear of death. Suhana is just 6 years old, in pain all the time and terrified of death that may come and snatch her anytime. Your contribution can save this little girl.

Supporting Document

The specifics of this case have been verified by the medical team at the concerned hospital. For any clarification on the treatment or associated costs, contact the campaign organizer or the medical team.

Click here to save Suhana