Help Ayaan to fight Duchenne Muscular Dystrophy

Sandhya Jariwala is organizing this fundraiser.

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Please Help -Ayaan with Life Saving Drug ' Viltepso'

Ayaan Jariwala, my 12 years old nephew, was diagnosed with Duchenne Muscular Dystrophy (DMD) which is a neuro-muscular rare genetic disorder at the age of 4 years. Duchenne affects approximately 1 in 5,000 live male births. In Duchenne, the whole body muscles lose control, and if not treated on time the lungs and heart also get affected which results in fatality by 20ties. I am so afraid of losing my nephew Ayaan. As he is already 12 years old and entering his teens and doesn't have much time.

Noble thought of Helping Ayaan came to me:

While visiting India I met my brother Zubair and Sister-in-law Sandhya ( Ayaan's Parents), they seemed worried but not broken, they are fighting and making a lot of efforts in India to get the miracle medicine ' Viltepso' by Nippon Shinyaku-Japan and get Ayaan treated.

And after meeting my nephew Ayaan and knowing more about his talent, I was sure and decided to help them by raising funds through Gofundme.

Ayaan gives strength to his parents as he is full of life, and always smiles and chuckles, his achievements as a young artist have given them a purpose to live.

My Nephew - Ayaan, I am so proud to say that is the winner of a UNESCO art drawing competition ( age 6-12 yrs), organized by UNESCO-IH Global Network. His Art 'The Rainbow Farm' was declared WINNER in 2022. He made his parents & school proud. And sent a message to the world that if you are positive, you can change adversity into opportunity.

What he loves most - Is ART, which is now his purpose of him to live. If not treated timely he will also lose his remaining muscles and he will stop doing ART.

Ayaan's Present condition:

Ayaan has stopped walking since 3 years and his body functions are very restricted now. He is barely able to eat. Only his forearms are functional. He is going to school and studying in grade 8. My Sister- in law Sandhya drives him down to the school and waits at the school till his school gets over as they can’t afford a driver. She feeds him in the school and also plays the role of his shadow teacher as Ayaan cannot open his geometry box or even his water bottle. For every small thing he needs assistance. He is very happy to go to school and meet his school friends (school is the only place where he has friends).

Ayaans treatment cost is 4,130,000 CAD as per the doctor. He has to take an infusion every week. Ayaan's parents have raised 247,000 CAD through friends and family and also by selling Ayaans artworks.

What is Viltepso :

VILTEPSO is indicated for the treatment of Duchenne muscular dystrophy (DMD) in patients who have a confirmed mutation of the DMD gene that is amenable to exon 53 skipping. This indication is approved under accelerated approval based on an increase in dystrophin production in skeletal muscle observed in patients treated with VILTEPSO.

If given to Ayaan timely 'Viltepso' will produce 6% dystrophin in his body and this therapy will soon stop any further muscle deterioration making his muscle stronger slowly and gradually. We are encouraged by success stories from the USA where this drug has shown positive results. Especially Sandhya's friend's son who is lucky to raise funds and move to the USA for the treatment is doing wonderfully good. Ayaan too needs a chance to live. Let's help him get his ' Viltepso'.

Why are we Fundraising

We have exhausted all our avenues to raise funds, but Viltepso is so expensive as per India's per capita income. And is not covered by insurance in India. It is impossible for my family to raise such a large amount. Without your support, it is very difficult for my brother to sustain Ayaan's treatment.

Ayaan's hope of survival and leading a decent life rests on your willingness to support this cause!

Payments from gofundme will be made to the pharmaceutical company or to their authorised subsidiary in lieu of purchasing this life-saving drug. We have also started crowdfunding in India and we plan to close the fundraisers across all platforms as soon as we reach the goal to buy the drug Viltepso.

How can you help

We believe your generous contribution to the fundraiser and sharing Ayaan's story with your family and friends will help get the medicine for Ayaan. Every single contribution will get Ayaan closer to treatment for achieving new lease of life and will help him fight the battle with Duchenne Muscular Dystrophy. Ayaan cannot walk or stand. But you can give him hope to stand again , and walk, and if the miracle happens then DANCE like other kids-Ameen