4-year-old Hiya's Rare Genetic Disease Could Take Her Life Without An Urgent Stem Cell Transplant | Milaap
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4-year-old Hiya's Rare Genetic Disease Could Take Her Life Without An Urgent Stem Cell Transplant

“My daughter, Hiya is afraid to walk by herself. She clings to me as she asked if God will ever cure her eyes. When Hiya's teacher told us to consult an eye doctor, we thought our baby will be fine one she gets glasses. Her  eyesight worsened. We found out she has a dreadful disease. The doctors said she will lose function in her hands and legs if we don’t get her treated in time. She is just 4 years old and we are unable to fight the disease that is paralyzing her.” - Ripal, mother

'With no treatment, she may live only for 3-4 years'

In Mumbai, Hiya was diagnosed with Krabbe disease, a disorder affecting the nervous system and development. It affects one in lakh children and is usually fatal. Cord blood stem cells can prolong her life and help her fight this disease.

"The symptoms begin with vision issues and can lead to blindness, she could even have hearing loss, change in muscle tone, high fever and seizures if we do not treat her. At the rate at which it is progressing, she will go blind if we do not consent for the stem cell transplant soon."

'She does not even step out of her room'

Hiya is known to be an active and smart little girl who won the first prize at the school competition reciting mantras. She would watch Chota Bheem and play with her 11-year-old brother Neel. She would even share her favorite food with friends at kindergarten.

"She knew the sound of my bike so well that she would come running into my arms as soon as I parked. Now she is so afraid to take a step out of her room. She cries out that she cannot see and begs for us to hold her hand even if we let go of her for a minute." - Hitesh (father)

Hiya is running out of time and the little income Hitesh earns is not enough to meet the treatment expenses

Hitesh works in a diamond shop to look after his family. They were leading a fairly comfortable life, content with what they had before the diagnosis. Since then, he has borrowed over Rs. 4 lakhs to pay medical bills. They are delaying the transplant since they are unable to come up with Rs 35 lakhs.


"It took just 3 months for her to go from winning first prize in her school function to near blindness. Every day there is a new symptom. Every day she is getting worse. If we delay her the transplant anymore, she will lose function in her limbs and even lose her life to this disease." - Hitesh

Imagine how scared this little girl should feel, unable to understand how her body is failing her. She wakes up afraid that she will not be able to see her parents again.

Your support can help Hiya live a normal life again

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.

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