Help Arya to get
the world’s most expensive drug (Zolgensma) for the treatment of SMA(Spinal
Muscular Atrophy)
Six-year-old Arya Pathak is a smart, talkative, and playful kid. She loves going to school, playing with friends. Arya has excellent interactive skills and paints very well. She loves to see other children run and has a desire to walk like them one day. SMA is a rear degenerative neuromuscular disorder characterized by the loss of nerve cells that control muscle movement. This loss causes muscle weakness affecting the Arya’s capability to walk, stand, swallow food, and even breathe sometimes. Arya cannot stand or walk and needs support for sitting. She uses uncomfortable spinal braces for keeping her spine straight and gestors for her legs.
Arya was one year
old when like every other kid she tried to stand but instead started falling on
her face while crawling. We were worried because something was wrong as the
crawling, scooting Arya suddenly stopped and became weak. In February 2016, she
was diagnosed with SMA. We were shattered to learn about the criticality of the
disease. I had dreams that she is walking around the house and playing to a
point that I could not differentiate between dream and reality.
Arya takes physiotherapy and occupational therapy at home daily which is very painful for
her. She also practices breathing exercises for improving her lung capacity.
She has very weak lungs and a low immune system that makes her susceptible to
infections. Normal cold accelerates and ends her in ICU for many weeks where
she cannot even breathe on her own and needs ventilator support. Recurrent episodes
of hospitalization have made her lungs even week. Arya's life expectancy
depends on the kind of care she receives.
Recently, an
expensive drug ZolgenSMA has been approved by European Council for kids
weighing less than 21 kg for SMA. The drug costs Rs. 16 Crores in UAE as well
as in India. According to the doctor she is eligible for all the three drugs
Spinraza, Risdiplam and ZolgenSMA. Although, doctor prefers ZolgenSMA, followed
by Spinraza. Risdiplam is preferred last option. We as parents are keen to get
her any treatment available in any part of the world through this fundraiser.
The early she
receives treatment more of her muscles we would be able to save. We can not
save our little girl alone and need your blessings and support to get through
this. Please help us.
Here are the Donations Links :-
Donate on Impact Guru - https://www.impactguru.com/fundraiser/help-arya-pathak
Donate on GoFundMe - https://www.gofundme.com/f/help-arya-fight-sma
Donate on GPay/ PhonePay/Paytm - 9424399551 (Rishi Pathak)
Follow and Support Link - https://linktr.ee/help.arya.fight.sma
Your Contribution can save Arya's life. I hope you will come forward and help us spread it.
