Wednesday, September 26, 2012

Save Shriya



Dear Readers,

I write this post asking for a favor. Please read the entire post with a little patience and consideration.

Shriya is a 2.5 years old baby (born on May 31st, 2010) diagnosed with Gaucher's disease. It is a rare genetic disorder caused by a hereditary deficiency of the enzyme glucosylceramidase, which leads to a collection of fatty material in the spleen, liver, kidneys, lungs, brain, and bone marrow. Little Shriya was diagnosed with Gaucher's Type 1 when she was 3 months old.

Here are the links of the case history and doctor's certificate.

Treatment

  • Enzyme Replacement Therapy (ERT): This is the only life saving treatment available world wide. ERT replaces the deficient enzyme with artificial enzymes. These replacement enzymes are administered in an outpatient procedure through a vein (intravenously), typically in high doses at two-week intervals.
  • Bone Marrow Transplantation (BMT): This surgical procedure has been used for severe cases of Gaucher's disease. In this technique, blood-forming cells that have been damaged by Gaucher's are removed and replaced, which can reverse many of Gaucher's signs and symptoms. This is a high risk treatment and is very rarely administered.

Monthly ERT is the only treatment option available for Shriya and she needs to undergo this at least until she is 18 after which oral medication can be considered. This enzyme needs to be imported from USA and costs 1650 USD and the dosage (and hence the cost) will change as Shriya grows up. The invoices till May 2012 are uploaded on the website. I have the invoices for the month of July if you want. And you can always request for the latest invoice from Shriya's parents and they are always prompt in replying. I am saying this based on my own personal experience. 

How can you help?

1. The biggest help this family needs at this time is financial. Any sort of financial help is most welcome. If you can contribute 100 USD great! If you can contribute 100 INR great! No amount is too big or too small. I have posted the donation details at the end of this post. I have used the online transfer without any hassles. I have always received prompt reply from Shriya's parents with proper acknowledgement.

*EDIT October 4th, 2012 - Fortis foundation has started a twitter campaign for Shriya. Fortis has pledged to donate Rs.10/- for every tweet with the tag #saveshriya. This is the website - https://saveshriya.fortishealthcare.com/. All you have to do is go to this link, click on tweet and submit. You do not even have to draft a message. It's all done for you. You can post as many, RT as many times. All you have to do is click. Easy, right? I have decided to set aside a time and RT 10 times a week. That's a 100 bucks a week from one person. If we can sustain only this, that will be more than enough! Yeah, that easy!

2. If you are a doctor or someone who can help with the medicine (enzyme) please do reach out to Shriya's parents. I am sure any and all information will be very useful for them.

3. Spread the word! Please spread the word! I can understand if you cannot help financially. Sometimes, we just cannot. But if you are reading this blog, I am sure, you can also copy paste this information on your twitter/Facebook/blog accounts and send it to your local charity chapters. Here is the Facebook group link. 

4. If you are in Delhi, you can make time to visit Shriya and just share your precious time with the little girl at the AIIMS whenever she gets in there for her treatment. I am sure you will feel as good as the Sethis. 

5. Whatever you can think of!

I assure you the validity of this post and all the links posted here. I have verified this personally and I truly believe in the cause. I am sure you will do everything you can. :-)

THANK YOU!! 

************************

Donations

Please make your donations in the name of SHRIYA SETHI
Account No. 911010065008502
Axis Bank Ltd,
A-13 Swasthya Vihar, Vikas Marg 
New Delhi-110092, India. 
IFS CODE:  UTIB0000055


Contribution in Foreign Currency can be sent to the PAYPAL Account: jay_hcl@yahoo.com
Please also mail your contribution details to shivanisethi0206@gmail.com for  tracking and acknowledgement purpose.

Contacts

Jaydeep Sethi (Father)
E-mail ID: jay_hcl@yahoo.com
Phone No: +91-9958284420
Shivani Sethi (Mother)
E-mail ID: shivanisethi0206@gmail.com
Phone No: +91-9810033778

4 comments:

Anonymous said...

Thanks Anusha for going the extra mile to validate Shriya's case and sharing your experience here. I wish your acts will inspire many and Shriya will be blessed to grow up to become a fine human being one day. Cheers.

Anusha said...

Dear Anonymous,

Thank you very much for your kind words. I am sure with a little help, she will get the life everyone deserves.

Cheers!

Anonymous said...

Thanks for verifying this case. Donating is the easy part. You did the hard part :)

Anusha said...

Thank you.. :-)