Team Alex

On July 1st ,2020 our hearts shattered to million pieces. We recieved devastating news that has changed our lives forever... Our older son Alex(13) was diagnosed with SMA Type 3( Spinal Muscular Atrophy). Alex is a very weak type 3 since he has only three copies of SMNGene2.

We can't explain how broken our hearts are and the sadness we are facing.
Alex is smart, outgoing, honor student at St Andrew's Episcopal School in Ridgeland, MS. He plays piano, loves math and swimming.  Alex was a part of St Andrew's swim team until last year.. He had  surgery evaluation and was diagnosed with pectus  carinatum "rotation" of the chest.  His doctor also noticed scoliosis and Alex needs to wear a brace.  As the disease progresses his lower limbs are getting weaker as well as his reflexes...
SMA is a disease that progressively take away physical strength by affecting the motor nerve cells in the spinal cord and take away the ability to walk, eat, and breath...

Our family is experiencing the darkest moment of our existence. We were robbed of our perfect life and the life we envisioned for Alex. He will require therapy and medication for the rest of his life.. Hopefully soon he will start treatment with Spinraza, medication that increase SMN( Survival Motor Neuron) protein production.  Spinraza is given through a procedure called an intrathecal injection. Spinraza is injected into cerebrospinal fluid(CSF) , which circulates around the spine and the brain. After receiving his 4 loading doses at 14-days intervals he will received a dose every 4 months for the rest of his life... 

Alex's life has been changed forever. To assist Alex we have launched a GoFoundMe campaign called 
#beatSMATeamAlex . We, his family, ask you to consider donating to help Alex step into his new and challenging phase in his life. 

If you are unable to support financially, please help share this campaign and Alex's story on social media.

SMA is something no child/ family should experience...

Sincerely,

The Slusarczyk Family