Ty Christian West was born with scoliosis and Down syndrome.  He was diagnosed with neuromuscular scoliosis soon after. His prognosis was not encouraging in the beginning.  At an early age, he developed aspiration pneumonia and congestive heart failure.

Ty was just months old when we found out that he had a tethered spinal cord with tumors.  His scoliosis was severe, the prognosis for walking was not good.  After his tethered cord surgery, he needed further help to breathe due to his neuromuscular scoliosis and thoracic insufficiency.  His rib cage was literally crushing his lungs. At 22 months of age, he was taken to Philadelphia to see if he was healthy enough for surgery. Ty Christian was approved to receive VEPTR II implants. It was lifesaving surgery for him. He began walking at 28 months!  We were so thankful!  Although he cannot endure to walk very far, the fact that he can walk is amazing. 

He has a Convaid EZ Rider wheelchair for activities that require sitting for extended times or traveling.  He continues to have spinal surgeries to keep his ribcage open so his heart and lungs can grow.  He was given a feeding tube due to his inability to swallow successfully. 

He was later diagnosed with Cerebral Palsy and Autism. Can you imagine having VEPTP rods in your back and not understanding that normal play causes pain?  That is just one small part of autism.  Sensory issues, perception issues, auditory processing issues and more, complicate therapy and treatment. 

Can you imagine not being able to communicate that you have pain until it becomes severe?  

Thankfully a new technology, iLs (intergrated listening systems) is being implemented in his speech therapy that has presented a breakthrough for Ty.  Speech is emerging fast! Ty has hypoplastic ribs and has a history of breaking ribs and dislodging VEPTR rods.  He attends virtual school from home because of his fragile condition and his inability to express pain.

Most recently, Ty has been diagnosed with Exocrine Pancreatic Insufficiency and is being tested for the cause of this.  We are hoping that with the results of the meds he will be able to gain weight and be more comfortable. 

In the past nine years, Ty Christian has had and will continue to have surgeries at Egleston Children’s Hospital of Atlanta to maintain his spine until maturity.  He has struggled with recovery from surgeries because of his lowered immune system.  Despite his challenges, he defies the odds.  He has fought massive infections in the incisions.  Finally we have found something that helps him and the last two surgeries have healed beautifully in spite of the pancreatic insufficiency.  It is whole food organic formula through his g tube.  

Currently, the spinal rods he has are the MAGEC Rods.  A magnetic rod that will expand WITHOUT surgery.  We hope to share and encourage others as we nervously continue on this journey with Ty!   We look forward to less surgery and more play time! 

Ty is a happy active child.  He loves singing and music, dogs, trains, dinosaurs, shopping and adventure!  He loves the ocean and Mickey Mouse.  He loves baseball!  His imagination is developing and he often replays events with his toys. In spite of many setbacks, he has always remained the delightful and happy person he is today.  It seems that his goal is to be sure that everyone around him laughs and smiles!  He has set the example for us.  He loves others and tries so hard to spread his infectious smile! Through Ty, we recognize what is important in life and realize that given two hands, if you are not helping someone you cannot truly experience joy.

0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *