Some of you already know our story through personal contact, newspapers and tv. Those of you who don't... well we are a family just like you trying to make it in the world. We have the same problems as you. We love each other, as you do. We fight with each other as you do. We laugh and cry and eat pizza on Fridays. We are just like you. The difference is our only child Sophia has a rare genetic condition called Spinal Muscular Atrophy SMA. Something that most people never heard about even though 1 in 40 is career of faulty gene.

Yes, it's tough. Yes, it's heartbreaking. Yes, it turns your life upside down. Yes, we are not sure about the future. Yes, we were robbed of carefree love. But... Yes, we are fighting. Yes, we are winning. Yes, We are loving each other and treasure each other every day as if there will be no tomorrow.

SMA robs you of physical strengths, but gives you different strength. With that strength we are changing the future for Sophia and other SMA people.

Feel free to browse through our full story here

https://m.facebook.com/PhiaSophiaSMA/

And join the community.

On the 3rd of September Sophia and I will complete 5k race in Parallel London in defiance to SMA. SMA does not define who we are. Sophia is receiving the only treatment available, but we want to do this for those who are still waiting for this treatment, for those who are getting weaker, for everybody! ...so they know that nobody is left behind...