Living With... San Luis Valley Syndrome

Faith is a 6-year-old little girl that loves to go to school. Her love for Physical Education class is apparent with her participation in swimming, bowling and playing catch. These are things that most little kids love to do. For Faith, it takes extra determination to participate.

Faith was born with a congenital heart defect (CHD) - Double Outlet Right Ventricle. It was repaired when she was just less than one month old and Faith was diagnosed with Restrictive Cardiomyopathy and San Luis Valley Syndrome (AKA) - Recombinant 8 syndrome two days after birth. In 2013, Faith was also diagnosed with Epilepsy after she had her first ever seizure in which she went into cardiac arrest. For Faith, this means that she is “not able to talk, walk, crawl and can only eat pureed foods.”

Anyone that meets Faith can’t help but focus on her smile, which is a reflection of her beauty, inside and out. Faith’s Mom says that “Faith is a very, very happy little girl. She always smiles no matter what, even when she's at her worst.”

Adaptive equipment has provided Faith a way to use her arms to be independent with mobility. Faith’s wheelchair was the first product that she was able to make herself roll with.

Faith has also discovered freedom with her Mobile Prone Stander. And she recently received a generous donation of a Freedom Concepts Discovery Tricycle. Her Mom describes her as “a fighter with the willpower of a superhero”! She definitely looks that way on her new tricycle!

We asked Faith’s Mom a few questions…

When did you first know that Faith had a disability? The day she was born. Faith was an emergency C-section due to her heart stopping. She was born at 1:15 PM on 8/16/07 and rushed off. I did not get to see her until 9:30 PM that night which is when I found out about her CHD.

What was your reaction? My mind and body went numb and I was not hearing a thing, but I could see the doctor’s lips moving.

How have you changed your life to incorporate Faith? I'm a stay at home mom and wouldn't change a thing. Faith is my world.

What is the most rewarding part of having a child with special needs? Faith is an amazing little girl and is such an inspiration. No matter what she's going through, she still smiles. She is a precious gift.