“One day I got a call from the school saying that Hiya is unable to write alphabets in order and asked us to consult an eye doctor. The doctors said she had a problem in her eyesight and she got glasses for the same. But that it didn't help her. She was losing her vision slowly and we soon found out that it was due to a dreadful disease. Now, she’s so scared of going out that she asks me to carry her every time I take her out. She cannot even walk on her own. She asks me,’Mumma, when will God cure my eyes?’ I try to hold my tears and console her saying she will get better soon. The doctors said she will lose movement in her hand and legs if we don’t get her treated in time. But we don’t have the means to arrange lakhs of rupees in such a short time.” - Ripal, mother
Hiya was once a happy and active child who loves spending time with her family and friends
Hitesh lives with his wife Ripal and children Neel (11) and Hiya (4) in Surat, Gujarat. Hiya just started going to school. She is active, smart and even started reciting the alphabet in just a month after she started going to school. Playing with her brother and watching Chota Bheem and watching TV with her family is one of her favourite things to do. Every time her mother sent her her favourite food for lunch, she would share it with all her friends in school.
“It was a proud moment for me when Hiya won the first prize in the fancy dress competition in school. She dressed up as a sadhvi and recited the holy mantra and everyone applauded her for her performance. But three months after she started going to school, we started getting calls from the teacher saying that Hiya might be having a problem with her eyesight. We took her to various doctors but we couldn’t find any answer as to why she was losing her vision. I was afraid that my daughter would go blind even before we could find out why.” - Ripal mother
Hiya is suffering from a rare genetic disorder that can worsen her condition if not treated on timeHiya’s parents took her to Mumbai, Maharastra for better consultation and she was diagnosed with Krabbe's disease, a rare genetic condition which occurs 1 in 1,00,000. It is a deadly disorder of nervous system that causes developmental problems and loss of hearing and sight if not treated in time. The only possible cure for this deadly disease is a stem cell transplant.
Every day that Hiya goes without the transplant will only worsen her condition, bringing her closer to death.
“Every day Hiya would run to the front door when she heard the sound of my bike outside. She would run towards me and hug me. Now she's scared to even step out of her room. When she wants to walk, she calls us to hold her hand and lead her. Even if we leave her alone for a few minutes, she starts crying and won’t stop it until we take her in our arms. I’ve never seen my daughter this scared in my life.” - 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. With the little income he earns, he could provide his family with a decent life. But now providing his little girl with a life-saving transplant that costs 35 lakhs is way beyond his means. He had to borrow 4 lakhs just for Hiya’s medical expenses. Hiya is running out of time and Hitesh is finding it difficult to arrange lakhs of money in such a short period of time.
“My daughter has become a totally different person ever since this deadly disease took over her life. She asks me, ‘Papa, I want to go out and play like my friends. I want to go to school with them.’ I worry that I won’t be able to provide my daughter with a normal life with no money left.” - Hitesh, father
How you can help
Little Hiya, who was once happy and chirpy, now lives in constant fear. With each passing day, she is losing her vision. Adding more pain to her suffering, she might even lose movement in her hands and legs. Her parents have borrowed money with which they could only look after her medical tests and check-ups. Now they have no money to provide a life-saving transplant that can let Hiya live a normal life again.