Ruslan's Fight for Life

Olga Vavilova and Evgueni Vavilov welcomed a beautiful baby boy on May 5th, 2019. Only the baby, Ruslan, wasn’t like other babies. Ruslan was born with a rare disease that has a very short life expectancy. 

Can you imagine as a parent hearing your baby will die before age 2?

His diagnosis? Spinal Muscular Atrophy (SMA) - Type 1 

Spinal muscular atrophy (SMA) is a group of genetic diseases that cause weakness and wasting in the voluntary muscles of infants and children and, more rarely, in adults. This disease affects nearly 1 in 10,000 children worldwide, attacking the motor neurons and limiting a child’s inability to move. 

As a child reaches 4-6 months, SMA becomes evident and the child struggles to crawl, walk and roll over like other children. 

Type 1 SMA progresses rapidly, with the weakening of muscles leading to frequent respiratory infections and death by the age of 2. Infants with SMA type 1 usually don’t manage to sit up unattended, and never learn to walk, as this severe disease attacks their motor skills. 

Olga and Evgueni have been denied a child who will run and play. Ruslan is not expected to live past the age of two. However, they have one hope...

You see, each day that passes lessens Ruslan’s chances of survival, as SMA rapidly robs his body of the ability to develop motor skills, making it more and more difficult to breathe. 

Ruslan’s hope is a miracle drug: Zolgensma. Zolgensma is given as a one-time infusion and has been approved by the FDA in 2019.

Zolgensma, the first systemic gene therapy of its kind, provides a cure for a muscle-destroying disease that can be a death sentence for infants and toddlers. The treatment is only intended for children up to age 2. 

The sooner the treatment is given, the better the odds that the quickly-moving progression of SMA will stop its attack on the infant’s body. Zolgensma is the only treatment that would give Ruslan a chance to meet his motor milestones and eventually walk. 

The problem - Zolgensma is the most expensive drug ever produced. Its price tag is $2.2M!

Ruslan does not qualify for any medical assistance or insurance coverage. Every day that goes by lessens his chances of survival. The hospital is unable to provide treatment unless paid in full. 

If your child needed a $2.2 M treatment to survive, what would you do? 

Olga and Evgueni are fighting for their child’s life. For you it may take a second to help, for him, it could mean a healthy and long-lasting life. Without the treatment, he will not survive! The goal is to raise money, to give baby Ruslan his rightful chance at LIFE. 

What can you do TODAY to help?

- Donate what you can, no amount is too little to save a child's life

- Please share GoFundMe link on your social media accounts and among your friends to encourage others to support

- Send your positive vibes and well wishes to baby Ruslan and his parents

Will you help Ruslan get his life-saving treatment? 


Disclaimer: 

The campaign is created at the request of Olga and Evgueni Vavilov as they are trying to fight for their child’s life

All funds will go directly from GoFundMe to Nationwide Children’s Hospital in Columbus, Ohio,  where Ruslan was accepted as a potential patient. 

All information related to diagnosis and cost of medical treatment can be found on social media pages listed below. To increase awareness, parents provide daily updates on social media platforms dedicated to Ruslan's fight for treatment: 

Instagram: https://www.instagram.com/saveruslan2019/

Facebook: https://www.facebook.com/saveruslan2019/