ELA'YA UMUT OL
We've started our campaign to raise the required funding for our beloved baby Ela Deniz's SMA 1 treatment; the world’s most expensive drug, which treats babies and young children with a rare and often fatal degenerative disorder. Ela Deniz was born on the 17th of July of 2018 and was diagnosed at 6 months.
Unfortunately we're running out of time to get Ela treated; Ela needs to be at a minimum weight of 13kg and she is currently at 12-12.5kg, if she gains another 1kg/puts on any more weight she won't be able to benefit from the medicine at 13kg. Sadly her mother has been feeding her very little and sometimes having to starve her at time so that she doesn’t gain weight as the treatment will not have a full effect on her if she weighs more than 13kg. This is awfully painful for a mother to do, not only does Ela’s mum watch her baby suffer every moment of the day but she also has to deprive her baby of food. We are urging you to share Ela’s story with everyone you know! Every share, every donation, every bit of support helps Ela get a step closer to being treated and having a healthy life.
Spinal Muscular Atrophy (SMA) is a rare, genetic neuromuscular condition causing progressive muscle wasting (atrophy) and weakness leading to loss of movement. This may affect crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing. The Zolgensma treatment helps halt its progression, meaning Ela would be able breathe without a ventilator, sit up, crawl and even walk, with benefits lasting more than five years after her first treatment.
We are reaching out to our family, friends and the general public to help us raise funds to give our baby Ela the best support she deserves. This can be done by donating, sharing our story to everyone and anyone you know, setting up fundraising ideas or events - whatever you can do will be truly appreciated. We can’t do this without you and we are so grateful for any donations or support.
Follow Ela Deniz's journey at @elayaumutol on Instagram!
Thank you.