Help Yura from Ukraine - SMA

Not many of you know what SMA is.

And you are happy not to know it… 

Spinal muscular atrophy (SMA) is a genetic condition that causes muscle weakness and atrophy.

SMA can affect child's ability to crawl, walk, sit up, and control head movements. It can damage the muscles used for breathing and swallowing.

All types of SMA need an ongoing treatment by a medical care team. 

When Yurko was born in 2010, there was no cure for SMA. Today, there is a medication available on the market - Evrysdi® (Risdiplam), but the cost is extremely expensive for an average Ukrainian  family and, unfortunately, is not covered by the government funding - only few SMA-children can receive Evrysdi from the state program. 

Evrysdi is a syrup that’s needed for Yurko every month. One vial (80 ml) costs $9,000 - he needs three vials per month making it $27,000 and $324,000 annually. I know, it is too much to ask, but this kid deserves our support.

Time is very crucial for children with SMA - medication should be given monthly, so the treatment is not interrupted.

Today, on February 17, Yura celebrates his birthday! HAPPY BIRTHDAY to him and let’s make a special birthday gift for this boy - a gift of LIFE and make his only dream come true - a chance to LIVE!

SMA is a disease that cannot be fought alone!

Any donation is very important and extremely valuable to us!

God Bless You!

Sincerely,

Ira.