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“Up until Ellen was about 5 months old, everything seemed normal and she was achieving all her growth milestones. She would kick her feet in the air, blabber sweetly, and respond to all sounds and visuals. But then, we noticed that she couldn’t push her feet, balance her head or move her hands like she used to. When we consulted the doctor, they said she might just be a late boomer and we thought that too. We never thought it would turn out to be a disease that could kill our baby before she can even turn 2.”
- Praveen, father
This disease can kill her before she even turns 2
Ellen, Praveen and Stella’s only child, has been diagnosed with Spinal Muscular Atrophy Type-1 (SMA), a rare and fatal genetic disorder that affects 1 in every 10,000 babies. It is the number one cause of infant deaths worldwide, and children affected by this disorder don’t usually make it past 2 years of age.The disease causes progressive weakening of the nerves and muscles which has already begun for this little girl. As Ellen is growing older, she is slowly losing more and more of her motor functions, she is not able to do basic activities like sitting up, lifting her head or swallowing milk, and even breathing on her own is becoming difficult for her now.
Only the world's costliest drug can save her
“It is killing me to watch my child get more and more sick right in front of my eyes. I am unable to do anything to stop it from happening. I can't give her any comfort either. Last month we almost lost her when she couldn’t breathe and her body turned blue. We prayed for the results to be false but they weren’t and now my sweet Ellen is losing every bit of life she has, gradually. I am afraid to lose her.” - Stella, mother
Without medical intervention, eventually her organs will stop working. SMA is a fatal disease with only one known cure, gene therapy using a drug called ‘Zolgensma’. It is a one-time dosage, imported all the way from the US, and comes at the steep price of INR 16 crores ($2.1M). But, Praveen and Stella cannot bear such an exorbitant expense.
Mere a middle-class family, they cannot afford the treatment required
“I work as a medical representative and my income is enough to provide my family a comfortable life but it is nowhere near to saving my daughter. 16 cr is an unbelievably huge amount that I will never be able to gather on my own on time. She turned 1 in August and with each passing day my child is losing more of her motor skills. Doctors say that in a few months the damage it will cause will be beyond recovery and soon her life will be at extreme risk. This disease has no mercy and only this drug can save my child. Please help me save my baby girl! You are my only hope.” - Praveen
Time is running out. Ellen needs to get the drug within the next few months or else she will be ineligible for it. Every penny is so important for this child’s survival and you can help by donating whatever you can. Please help these parents save their daughter.
