Roman vs Sma

“Everything is possible even the impossible.”
-Mary Poppins

Thank you to all the friends and family that encouraged us to start this “Go Fund Me” page for Roman. We are so grateful for all the kind words and support we have received.

It’s uncomfortable asking for help, but if it will make things better for our son, we can’t let our pride get in the way.

Roman Sayed Noori is our world.
He is more beautiful, intelligent and cheeky then we could ever have imagined.
A week before his first birthday we received his diagnosis and our world fell apart. He is so full of life, yet trapped in his little body.

Roman suffers from Spinal Muscular Atrophy (SMA). He can not sit on his own and he may never crawl or walk. We dream and believe he will prove this to be wrong. We will fight to get him the best treatment and care possible.

We had never heard of SMA until a month or so before his diagnosis. It then became our worst fear, and sadly our reality. You never think that it will be you, or your child.

SMA is a rare degenerative genetic disease that robs people of their physical strength. It is caused by a depletion of the SMN1 gene causing ones muscles to starve and die.

SMA is the number one genetic cause of death for infants. Eventually your body gives up on you loosing your ability to eat and even breathe. This has changed and victims of this cruel disease now have hope.

There are currently two newly FDA approved therapy’s to treat SMA, Spinraza approved Dec 23, 2016 and Zolgensma approved May 29th, 2019. As unlucky as we may be, we are lucky to have treatment. 

Spinraza activates the back up SMN2 genes to produce the missing protein.
It requires an injection to the spine every 3 months for life, or until your spine can not take it. Zolgensma is a one time treatment that replaces the missing gene.

We just started Roman on Spinraza and it has been a nightmare watching him suffer through blood draws and spinal injections.

We know we are lucky to have access to this medication, but we are so in love with Roman and want the very best for him.
We believe that is zolgensma.
Time is running out because he must receive this treatment before he is two.

Zolgensma is not even on the map in canada yet, and costs 2.125 million US. We would need to have the procedure done in the States, which is even more money.

Zolgensma (being a one time infusion) means Roman wouldn’t need the maintenance doses of Spinraza every 3 months for life. Less time spent in the hospital, meaning less exposure to illness, that could be deadly for him. It could also potentially open doors to him receiving dual therapy’s in the future.

We know 2.1 million is far fetched, but as parents we owe it to Roman to try everything we can. 
We have absolutely no idea what ‘goal’ to aim for as we don't know the level of care Roman will need over the years, but absolutely anything will make a difference.

The list is long...
Special braces, adaptive strollers, car seats, wheelchair, standers, cough assist machine, suction machine, physiotherapy, swimming lessons, more advanced doctors abroad, any home renovations to make the house more accessible for Roman.

Romans health is invaluable and all of the money in the world couldn’t change his  diagnosis and the uncertainty of it, but we would love to be able to afford more specialised care and opportunities for him.

For anyone out there unable to contribute financially there are other ways you could help:

August is SMA awareness month.
Share Romans story!

We have even run into many doctors that know very little about SMA.

Advocate to add SMA to the newborn screening.
The earlier SMA is treated the less damage is done.

Pray and cheer for Roman!

Thank you ❤