A GoFundMe campaign for Aryan Deol, who was born exactly a year ago (August 7, 2019) and who was diagnosed with Type 1 Spinal Muscular Atrophy (SMA), had raised $2.5 million by his first birthday (Friday, August 7), thanks to more than 31,000 donors.
Savita Majhu is organizing this fundraiser on behalf of Gaganpreet Deol, the baby’s father.
According to the GoFundMe page, Aryan was born two and a half months premature. It states: “Aryan’s mother, Harpreet, started noticing decreased movement in Aryan in early January 2020. He was taken to Surrey Memorial Hospital where they then transferred him to the B.C. Children’s Hospital in Vancouver, B.C. to run further tests. Aryan was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) on January 29, 2020. SMA is a genetic disease which prevents people of their physical strength and affects the motor nerve cells in the spinal cord. This takes away the ability to eat, walk and breathe. Type 1 is the most severe type of Spinal Muscular Atrophy.
“Aryan is an adorable, loveable, sweet and charming baby who is loved dearly by his friends and family. He came into our lives as a ray of sunshine. In just 6 months he has made our lives so much more meaningful and purposeful and we could not imagine life without him. Aryan loves having his diaper off, his head rubbed and loves doing the bicycle with mom and dad! We would all love for Aryan to live a long, healthy and happy life and we are ready to do anything it takes to make sure he receives the best medical care possible.
“In Canada, we do have a treatment called Spinraza available to us. Spinraza increases the survival motor neuron (SMN) protein production, addressing an underlying cause of SMA. We are grateful that we have this available as just a few years ago, babies with SMA did not have this hope and would likely not live to reach the age of 2. Spinraza is not a permanent fix for Type 1 SMA, it will only control the symptoms and will be needed systematically for the rest of Aryans life by being injected into his spine.
“There is a treatment available which is called Zolgensma. It is made up of a new, working copy of a human SMN gene that is placed inside a vector. A vector’s job is to take the new, working SMN gene to the motor neuron cells in the body. When the new gene reaches its destination, it is ready to tell the motor neuron cells to start making SMN protein. Zolgensma works on the protein gene and is a once in a life time injection and is given in either the arm or leg. These are all positive outcomes and would allow baby Aryan to no longer have the difficult symptoms of SMA and make his life easier without difficulty walking, eating or breathing.
“Zolgensma is FDA approved in the United States and is unfortunately not available in Canada. This treatment is $2.1 million dollars USD. As parents it is devastating knowing that there is a cure out there and that we may not be able to afford it for our child. We are requesting our community, family and friends and everyone willing to help donate or share our page as every share and donation will make a difference and will bring baby Aryan that much closer to this life saving medication he desperately needs. We would love to express our appreciation to everyone who is willing to help our family. We can’t explain how broken our hearts are and the sadness we are facing. SMA is something no child should experience. To help get the word out, please share this Go Fund Me on Facebook, Instagram, and Twitter and get your friends and family to do the same. We will always be grateful to everyone who helped. Please follow us on Instagram for more updates on Aryan @aryansfight.sma”