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Help My Daughter Live #HelpSaveAvishi


Our daughter, Avishi has been diagnosed with MPS Type VI (Mucopolysaccharidosis Type 6) - a very rare, debilitating & life-threatening genetic disorder. If left untreated, expected life span would be age 20 to 25 years with deteriorating body condition every year.
 
Unfortunately she cannot receive treatment for this rare disease in India, as there are no expert medical centers with experience, cutting-edge technology and research for MPS. We need to quickly move her to UMC Utrecht (Netherlands) for required treatment. The hospital cost is (1,94,000 Euros or Rs. 1.47 crores). Add another Rs. 48 lakhs towards living expenses for 1-year at Netherlands. Total cost of treatment is Rs. 1.94 crores approximately.
 
To view complete details, scanned documents, medical records, doctor's prescriptions, photos, media coverage etc. please visit http://www.helpsaveavishi.com
 
We have tried knocking many doors with government authorities in India, met health minister of Rajasthan many times, newspaper & media coverage etc. A Government Committee was also formed by Health Minister of Rajasthan to look into the matter, but to no avail.

Your donations will go towards easing the burden of Avishi's treatment, medical care and incidental costs associated with a long stay away from home over the next several months. We need to act very quickly as the count goes in days.

During this difficult journey, your prayers and support will make a lot of difference. We look forward to seeing Avishi grow up normally, run around with the wind in her hair, dance with her parents at her wedding and enjoy everything that life can offer.
 
We will continue to update you on Avishi's treatment progress through this page, through Facebook and our website - www.helpsaveavishi.com

Thank you so much for your love, support and generosity !
 
-Abhisek Jain & Shikha Jain
(Avishi's father & mother)
 
For more details, please visit:
http://www.helpsaveavishi.com







Ask for an update
23rd November 2016
Dear Supporters,

I would first of all like to extend my heartfelt gratitude to all of you for your support and constant prayers. It is all thanks to your help and support, Avishi has been finally admitted to hospital last Monday (14-Nov-2016) in Netherlands and her long-awaited treatment has started. All her prescreening tests/examination reports went fine. Avishi is currently at UMC Utrecht (Netherlands) in it's children's hospital known as Wilhelmina Children's Hospital.


I could not keep you posted in the interim period as we had to arrange for the travel, close our residence in Jaipur, do the medical visa formalities at Netherlands Embassy in New Delhi etc. Even after reaching here in Netherlands, it was a challenging task finding a house on rent (with direct bus connectivity to hospital) and we had to change accommodation twice (Airbnb temporary houses) before finding the third and final house on rent. Before the final hospital admission last Monday, there were a lot of pre-screening tests and multiple visits to the hospital.


I would also like to share an important update. In order to help us achieve our crowd-funding goal faster, another crowdfunding website - BitGiving has come forward to help us and started a campaign in collaboration with Milaap. Avishi's crowdfunding campaign on BitGiving is being supported by News18 / CNN News18 (formerly CNN IBN) TV News Channel. It is for the first time that two crowdfunding websites have come together in India to help a campaign reach it's goal faster. CNN News18 network is helping by mentioning Avishi's cause on it's digital media, social platforms etc. and a probable television mention in coming days.

Avishi's Treatment Progress:


1) Central Line (Hickman Catheter) put on first day of hospital admission [Monday, 14th November] on right side of chest. This will be there for next two months and will be used for administration of all kinds of injections, infusions, medications, as well as for the withdrawal of blood for daily tests etc.

2) Immunotherapy started last Wednesday [16th Nov] and got over last Saturday [19th Nov].

3) Chemotherapy started last Sunday [20th Nov] and last/final dose will be today [Wednesday, 23rd Nov].

4)Stem Cell Transplantation coming Friday (25th Nov '2016) -THE BIG DAY !

Avishi has been responding well to the treatment. The hospital, it's doctors and nursing staff are taking good care of Avishi. The hygiene levels are being maintained very strictly and we have to wear gowns/aprons and masks all the time in the room and sanitize our hands at three levels before entering the room. The room has got air filters & air purifies and two doors / two levels of entrance to keep away infections/viruses/bacteria etc.

Avishi has to stay inside the protected environment of the room all the time and cannot go outside the room. We try to keep Avishi busy / distracted with the help of toys.

I do not have enough words to thank all of you for your support and for making this treatment a reality. I will keep you posted with Avishi's treatment progress.

Hoping and praying for the best. Seeking everyone's blessings and wishes.

Warmly,
Abhisek

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