Help Jayashruthi Who Is Fighting From Gaucher Disease | Milaap
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Help Jayashruthi Who Is Fighting From Gaucher Disease

In the beginning, Shruthi’s growth rate was normal then she started falling sick and the visits to the hospital became more frequent, and she was eventually diagnosed with Gaucher’s Disease.

   When She was eight months old she started to have stomach pain and bulging problems. As time passed, we realized that our daughter did not reach the development milestone of other babies.

   By the time she was two her tummy was enlarged, Shruthi was very weak and had to be hospitalized regularly. She was not able to walk or jump like any other child, we consulted various doctors. However, no one was able to give a proper diagnosis.
    
When Shruthi turned 3 Years and 6 Months she started to the complaint on intolerable stomach pain and joint pains, she was hospitalized and several tests were done, her biopsy results revealed that she had Lysosomal Storage Disorder which leads to accumulation of glucocerebrosidase in liver, spleen, bone and other macrophage systems.
                
   The doctor told this is a type of Lysosomal Storage Disorder characterized clinically by hepatosplenomegaly, growth retardation, pancytopenia, secondary to hypersplenism and episodic bone crisis, this untreated disease is universally fatal. The specific treatment for this disease is Enzyme Replacement Therapy (ERT) and the approximate cost of ERT at her weight of 14kg is 50 Lakhs per annum. The therapy is life long and the cost of therapy increases in age and growth.
     
The world collapsed around us, we kept searching for the medication in vain and we were heartbroken. In desperation, we took her to see many doctors and religious seers. Shruthi continued to fall sick often and her platelets counts were going down on every passing day. We also noticed some change in her eyesight and later diagnosed as ocular motor apraxia in which she used her head thrust to initiate vertical and horizontal saccades. Her backbone started to get collapsed. She has generalized epilepsy and her spleen was massively enlarged.
     
    In the year 2017 December, she has undergone partial splenectomy surgery which is just prevention and ERT is the lifesaver. We tried to procure medicine from abroad, but it was too expensive. Genzyme corporate develops the Drugs ERT which has to be given every 15 Days.
  
  Her health condition is worsening day by day, as per doctor advise ERT should be given to Shruthi as soon as possible and It is highly expensive. Please help us to ger her medication. Droplets make the ocean, a penny from you can save my daughter’s life.

I would be grateful for your kindness.
Doctors letter and test report
Doctors letter and test report
Doctor Letter
Doctor Letter
Ask for an update
11th August 2020
Dear Supporters,

Thank you for the wonderful support. Jayashruthi has undergone partial splenectomy surgery which is just a prevention and Enzyme Replacement Therapy (ERT) is the lifesaver. Please keep sharing and supporting. Will keep you posted.

Thank you!
Dear Supporters,

Thank you for the wonderful support. Jayashruthi has undergone partial splenectomy surgery which is just a prevention and Enzyme Replacement Therapy (ERT) is the lifesaver. Please keep sharing and supporting. Will keep you posted.

Thank you!
1st July 2020
Dear Supporters,

Thank you for the wonderful support. Jayashruthi has undergone partial splenectomy surgery which is just a prevention and Enzyme Replacement Therapy (ERT) is the lifesaver. Please keep sharing and supporting. Will keep you posted.

Thank you!
Dear Supporters,

Thank you for the wonderful support. Jayashruthi has undergone partial splenectomy surgery which is just a prevention and Enzyme Replacement Therapy (ERT) is the lifesaver. Please keep sharing and supporting. Will keep you posted.

Thank you!
30th June 2020
Hello Everyone,

Thank you so much for each and every soul who gave us a helping hand to bring our child healthy again. I feel really happy to share my happiness as a mom who was once completely broken seeing her child devasted with disease and now with all your support started to medicate my child and witnessing loads of improvement in her.

Please do support us as you do now. Once again thank you all, we will remain grateful forever.
Hello Everyone,

Thank you so much for each and every soul who gave us a helping hand to bring our child healthy again. I feel really happy to share my happiness as a mom who was once completely broken seeing her child devasted with disease and now with all your support started to medicate my child and witnessing loads of improvement in her.

Please do support us as you do now. Once again thank you all, we will remain grateful forever.
Rs.447,119 raised

Goal: Rs.5,000,000

17 Days to go

Beneficiary: Jayashruthi info_outline

Supporters (335)

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Anonymous donated Rs.5
Samskruthi
Samskruthi donated $30
A
Anonymous donated Rs.500
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Anonymous donated Rs.5
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Anonymous donated Rs.10
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Anonymous donated Rs.105