Campaign Ended! The campaign ended on December, 04 2016

Help Siddhant and Sayali fight Lamellar Ichthyosis

Personal Health

Help Sayali and Siddhant fight from the rare skin disease 'Lamellar Ichthyosis'

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Gaurav
  • Documentary by FTII on Siddhant and Sayali.

    by Gaurav on May, 31 2017

    #6

     

    It's a proud moment to share with all the donors and supporters that FTII had seen this campaign and noble gesture of all you supporters. Their team had decided to meet the kids and shot a small documentary on them. 

    Please have a look to short glimpse on their life and you all must be proud that your support had helped them alot. You can see the result in this small video link shared below.

    Thank you everyone for your constant support and prayers. Many thanks to Devanshi and entire  Ketto team along with Humans of Pune for their support.

    Documentary You Tube Link -  https://www.youtube.com/watch?v=OTLOAja4_wY


    Also request you all to please like and spread the awareness.


    Regards

    Gaurav

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    Help spread the word!

  • We have managed to raise Rs. 1,91,052 /-

    by Gaurav on November, 29 2016

    #5

     

    Dear Saviors,

    Greetings!! 

    Thank you so much for coming forward and support to Siddant and Sayali.

    With all your support we have managed to raise Rs. 1,91,052 /- so far and this is be help Siddant and Sayali to get the medicine only for 8 months and we need to support them more as this disease will take much longer time to make them little better.

    The good thing by this time is that these few months from December till February are less painful to the kids compared to other months therefore we need to support them more so that they can continue with their treatment.

    Look forward to have more and more support for Siddant and Sayali.

    Please keep supporting and do keep them in your prayers.

    Regards

    Gaurav


    Did you know that every FB share gets 1 more donation.
    Help spread the word!

Read previous updates  

About the Fundraiser

IMPORTANT -

Thank you everyone for your support and blessings to Devraj.

Though the campaign deadline passed and unfortunately target goal amount was not fully met.Hence anyone wishing to help or contribute further may please contact me connectwithsmile3@gmail.com

Thanks again for your kind gesture and support.Please do keep supporting and also keep Devraj into your prayers.

Regards

Gaurav 

Disturbing pictures show the daily ordeal of a young brother and sister in India as they battle with a rare skin disease that leaves them with scales all over their body.

Sayali Kapase, 13, and her brother Siddhant Kapase, 11, were pictured at the Dr. DY Patil Medical College and Research Centre in Maharashtra, India, as they were treated for 'Lamellar Ichthyosis'. 

Their condition means they have scales all over their body and dried skin that keeps peeling off.

 

The pair's mother Sarika Kapase, 31, and father Santosh Ramchandra Kapase, 39, have to attend the hospital with them along with their nine-month-old daughter Manasvi.

 

Both siblings have to apply medicated oil at least three times a day as well as medicated soaps, shampoos, lotions, and creams to keep their skin in tolerable condition which their parents can't afford.

Sarika is a home maker and Santosh is working in a factory with a mere salary of Rs. 8,500/- P.M.

What is  'Lamellar Ichthyosis'?

This is an extremely rare skin disorder characterised by abnormal scaling and shedding of the skin. It is estimated to occur in one out of 600,000 births. Most affected individuals will be born as a 'collodion baby', states the Ichthyosis Support Group

 

'The skin appears to have large plate-like scales which often are rather dark or brownish in colour. The scaling often involves all of the skin although the face may show milder changes,' the group said. 

 

The condition usually appears in the first few days of life, lasts lifelong and can be very severe. It is not contagious. Lamellar Ichthyosis is usually inherited in an "autosomal recessive" fashion. This means that each parent has normal skin but is a carrier for one single abnormal gene that cause it.

 

 

One complication caused by the disease is overheating where the scaling of the skin prevents normal sweating so hot weather or vigorous exercise can cause problems. 

If left untreated, the skin of the palms may also become thickened, tight and prevent normal bending and straightening of the fingers.

 

 

Their treatment is life long therefore Need your support to help both Sayali and Siddhant to manage to get their medicines and lotions as the monthly expenses for them has gone upto Rs. 20,000/- P.M. which their parents can't afford.

 

Reference Links: Daily Mail Mirror

Picture courtesy: Daily Mail/Cover Asia Press

 

Please do come forward to support them. They need your support and prayers.

 

 


 

 

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