Little Girl Will Lose Her Vision To A Rare Disease Without Urgent Help | Milaap
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Little Girl Will Lose Her Vision To A Rare Disease Without Urgent Help

“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 once 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
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24th September 2019
Dear Supporters,

We would like to inform you that Hiya is doing well post transplantation and is undergoing physiotherapy sessions for her eyes, legs and hands. Doctors have said that her complete recovery will take time.

Thank you so much for all the support.

Regards,
Hitesh
Father
Dear Supporters,

We would like to inform you that Hiya is doing well post transplantation and is undergoing physiotherapy sessions for her eyes, legs and hands. Doctors have said that her complete recovery will take time.

Thank you so much for all the support.

Regards,
Hitesh
Father
12th July 2019
Dear Supporters,

Thank you you all for your amazing support to Hiya's treatment.

She has completely recovered after the post transplantation. Mild GCHD skins and mild fever  has  completely cured and is doing well now.

Again we thank you for your kind support

Regards,
Archana
Dear Supporters,

Thank you you all for your amazing support to Hiya's treatment.

She has completely recovered after the post transplantation. Mild GCHD skins and mild fever  has  completely cured and is doing well now.

Again we thank you for your kind support

Regards,
Archana
1st March 2019
Dear Supporters,

Thank you for your continuous support for Hiya's treatment.

Today is Hiya's 28th day post-transplant. She is doing much better and is now home recovering.
She has mild GCHD skins which produces dot like formations all over the skin and a mild fever. However she has been given medication for the same.

Do keep her in your prayers. Thank you all.

Regards,
Hitesh
(Father)

Dear Supporters,

Thank you for your continuous support for Hiya's treatment.

Today is Hiya's 28th day post-transplant. She is doing much better and is now home recovering.
She has mild GCHD skins which produces dot like formations all over the skin and a mild fever. However she has been given medication for the same.

Do keep her in your prayers. Thank you all.

Regards,
Hitesh
(Father)

Content Disclaimer: The facts and opinions, expressed in this fundraiser page are those of the campaign organiser or users, and not Milaap.
Rs.0 raised

Goal: Rs.3,500,000

Beneficiary: Hiya Mavani info_outline