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I M. Kiran Kumar humbly request for financial support from each and everyone for your respective contribution to help my daughter in getting treatment for Gaucher Disease, that my daughter M. Parnika was born on 27.04.2018. She was suffering with respiratory disorders and suffered serious ill health during June, 2019.
Immediately baby was taken to Pallavi Children’s Hospital, Prerana Hospital for Women and Children and Rainbow Children’s Hospital and upon various tests conducted and upon conducting various tests there, we were directed to meet Dr. Radha Rama Devi. After consulting various doctors and based on the clinical features and laboratory findings it was declared that the baby is deficient in glucosidase and hence suffering with type I Gaucher disease which requires Enzyme Replacement Theraphy (ERT) with recombitant imiglucerase enzyme (Cerezyme), Gaucher is a Lysosomal storage disorder, a rare genetic metabolic disease caused by an inborn enzyme deficiency, which leads to growth failure, significant enlargement of the liver and spleen, skeletal involvement with predisposition to fractures and bone marrow infiltration and severe anaemia and low WBC and platelet counts.
If untreated it has a high risk of mortality. That the Gaucher’s disease is learned to be a genetic disease in which fatty substances (Sphingolipids) accumulate in cells and certain organs. The disorders accumulate in cells and certain organs. The disorder is characterized by bruising, fatigue, anemia, low blood platelets and enlargement of liver and spleen. It is caused by deficiency of the enzyme glucocerebrosidase (also known as glucosylceramidase).
This enzyme acts on the glycorelipid glucocerebroside (or glucosylceramide). When the enzyme is defective, glucosylceramide accumulates, particularly in white blood cells, most often spleen, liver, kidneys, lungs, brain and bone marrow. Manifestations may include enlarged spleen and liver, liver malfunction, skeletal disorders and bone lesions which may be painful, severe neurologic complications, swelling in lymph nodes and adjacent joints, distended abdomen, a brownish tint to the skin, anemia, low blood platelets and yellow fatty deposits on the white of the eye(sclera) Enzyme Replacement Therapy (ERT) with recombinant imiglucerase enzyme (Brand name Cerezyme) has been found to be an effective therapeutic modality of Gaucher disease. ERT is to be administered in the form of fortnightly infusions lifelong.
The Baby condition is likely to improve significantly with timely and regular administration of ERT. Hence the provision of ERT is strongly recommended and dosage of medicine depends upon variation in the weight of the child and cost of the Cerezyme 400 IU vial drug required for the baby is estimated at Rs. 40,00,000/-(Rupees Forty Lakhs only) per annum and the said drug has to be invariably imported from USA. The said quotation is given by Sandor Medicaids, Hyderabad, which is providing the said drug. . My daughter is affected with the said disease is susceptible to infections. I live in Jagtial along with my family.
I am working as a private employee and taking care of my family with my earnings, I had to spend lot of money to get the tests and the concerned done so far for my daughter and all the revenue sources to take care of my daughter i.e. I been exhausted in a short time. That the health condition of the baby is very critical and the doctors have strictly advised administration of Enzyme Replacement Therapy immediately. I and my wife are making all efforts to save our daughter. I request that unless Enzyme Replacement Therapy is administered to my daughter as early as possible, her survival is difficult. That the costs of administering the said ERT is very expensive and beyond my reach. I have to spend around Rs. 500000/- every month for securing Cerezyme drug and administering the same to the baby every fortnight. Administration of the said drug treatment to the baby is lifelong or at least till she becomes self affluent to bear the said cost.
Health condition of the baby has alarmingly deteriorated and her last clinical report given by1.10.2019 has shown abnormal highly deficient levels in his blood tests. I don’t have financial support to get my daughter treated with Enzyme Replacement Therapy. Medically treated at Rainbow Hospital. I, therefore, request for your kind contribution to save my baby life and it will be a great help from your end
Immediately baby was taken to Pallavi Children’s Hospital, Prerana Hospital for Women and Children and Rainbow Children’s Hospital and upon various tests conducted and upon conducting various tests there, we were directed to meet Dr. Radha Rama Devi. After consulting various doctors and based on the clinical features and laboratory findings it was declared that the baby is deficient in glucosidase and hence suffering with type I Gaucher disease which requires Enzyme Replacement Theraphy (ERT) with recombitant imiglucerase enzyme (Cerezyme), Gaucher is a Lysosomal storage disorder, a rare genetic metabolic disease caused by an inborn enzyme deficiency, which leads to growth failure, significant enlargement of the liver and spleen, skeletal involvement with predisposition to fractures and bone marrow infiltration and severe anaemia and low WBC and platelet counts.
If untreated it has a high risk of mortality. That the Gaucher’s disease is learned to be a genetic disease in which fatty substances (Sphingolipids) accumulate in cells and certain organs. The disorders accumulate in cells and certain organs. The disorder is characterized by bruising, fatigue, anemia, low blood platelets and enlargement of liver and spleen. It is caused by deficiency of the enzyme glucocerebrosidase (also known as glucosylceramidase).
This enzyme acts on the glycorelipid glucocerebroside (or glucosylceramide). When the enzyme is defective, glucosylceramide accumulates, particularly in white blood cells, most often spleen, liver, kidneys, lungs, brain and bone marrow. Manifestations may include enlarged spleen and liver, liver malfunction, skeletal disorders and bone lesions which may be painful, severe neurologic complications, swelling in lymph nodes and adjacent joints, distended abdomen, a brownish tint to the skin, anemia, low blood platelets and yellow fatty deposits on the white of the eye(sclera) Enzyme Replacement Therapy (ERT) with recombinant imiglucerase enzyme (Brand name Cerezyme) has been found to be an effective therapeutic modality of Gaucher disease. ERT is to be administered in the form of fortnightly infusions lifelong.
The Baby condition is likely to improve significantly with timely and regular administration of ERT. Hence the provision of ERT is strongly recommended and dosage of medicine depends upon variation in the weight of the child and cost of the Cerezyme 400 IU vial drug required for the baby is estimated at Rs. 40,00,000/-(Rupees Forty Lakhs only) per annum and the said drug has to be invariably imported from USA. The said quotation is given by Sandor Medicaids, Hyderabad, which is providing the said drug. . My daughter is affected with the said disease is susceptible to infections. I live in Jagtial along with my family.
I am working as a private employee and taking care of my family with my earnings, I had to spend lot of money to get the tests and the concerned done so far for my daughter and all the revenue sources to take care of my daughter i.e. I been exhausted in a short time. That the health condition of the baby is very critical and the doctors have strictly advised administration of Enzyme Replacement Therapy immediately. I and my wife are making all efforts to save our daughter. I request that unless Enzyme Replacement Therapy is administered to my daughter as early as possible, her survival is difficult. That the costs of administering the said ERT is very expensive and beyond my reach. I have to spend around Rs. 500000/- every month for securing Cerezyme drug and administering the same to the baby every fortnight. Administration of the said drug treatment to the baby is lifelong or at least till she becomes self affluent to bear the said cost.
Health condition of the baby has alarmingly deteriorated and her last clinical report given by1.10.2019 has shown abnormal highly deficient levels in his blood tests. I don’t have financial support to get my daughter treated with Enzyme Replacement Therapy. Medically treated at Rainbow Hospital. I, therefore, request for your kind contribution to save my baby life and it will be a great help from your end
