Bryan's challenges with SLOS

Bryan is 5 years old and has a syndrome called SMITH-LEMLI -OPITZ. 
Slos is a metabolic disorder caused by mutation in the DHCR7(7-deyhdrocholesterol reductase) gene on chromosome 11. People who have SLOS are unable to make enough cholesterol to support growth and development. 

All proceeds raised through this site will be used for BRYAN'S direct benefit and needs.

We have to build a new home for Bryan and his needs as our older 2 story home does not accommodate bryans handicap needs. Examples would include a ranch home for wheelchair accessibly and extensive bathroom modifications. Wide sidewalks and doorways. Bryan getting bigger and it's becoming more difficult to care for him so this new home will be for a better quality of life due to these items not being covered by insurance or state/federal programs. 

Bryan has type ll SLOS which means he is considered a severe case. He was in the NICU and in the hospital for the first month of his life. He had to have surgery at 3 weeks old to place a g-tube. At 6 months old he had heart surgery. At 8 months old he had surgery for his tethered cord. He's had cleft palate surgery and many many other surgeries. He is followed by 16 or so specialist doctors.   Bryan does not walk, talk, or eat orally. He received early intervention therapies in the home until the age of 3.  When early intervention ended, Bryan started school at a special needs school, Easter Seals. He receives PT therapies to help him learn to walk, speech therapies to help him learn how to communicate, OT therapies to learn fine motor skills and to eat.  Bryan also has behavior issues and sensory issues. Bryan is solely feed by his g-tube and takes medications daily.

Bryan has special needs but he has come so far from what the Drs had told us in those  initial meetings. For the most part Bryan is a happy little kid. He loves silly noises and he's belly laugh will just make you want to laugh, it's just so adorable. He loves to be held, to swim, and to be spun around.  I hate talking about what Bryan can't do but what Bryan CAN DO, he can light up a room with his laugh, along with the facial expressions he makes. 

Thank you for any donations as they are greatly appreciated. With your help we will be able to build a house to fit Bryan's needs or do the  adaptations with wider doorways, wider sidewalk, a lift and anything else that our house will need to be able to care for Bryan.