If you saw the recent Julia Roberts/Owen Wilson movie Wonder, you are now familiar with Treacher Collins Syndrome.  That movie features the story of a young man born with it.  Treacher Collins Syndrome is a rare genetic disorder that is characterized by deformities of the ears, eyes, nose, cheekbones and chin.  A young man from Owensboro was just born with this same syndrome.  This is Baby Jamarius, or his family members call him, Our Wonder Warrior.

Photo courtesy of Mike Rudd
Photo courtesy of Mike Rudd

My friend Mike Rudd emailed about Jamarius and asked that I share his story.  And, obviously, I will gladly do it.  Young Jamarius was born on January 9th, nearly six weeks before his due date.  He was immediately diagnosed with Treacher Collins Syndrome.  Jamarius and his mom, Jasamine Brown, have quite the long road ahead of them.  While life expectancy is normal, children with Treacher Collins Syndrome face multiple surgeries and treatments in order to ensure they have proper quality of life.  Typically patients face reconstructive surgeries, speech therapy and other methods of rehabilitation.

Because of this, friends and family of Baby Jamarius have establised a Go Fund Me account to help offset the cost of treatments.  Jasamine is a single mother now facing travel (Jamarius is being treated in Louisville), hotel stays, food, lost wages and hospitalization and treatments for young Jamarius.

Jamarius' issues started almost immediately.  According to family members, he was rushed to surgery as soon as he was born.  His cleft palate was so severe, he had to have an emergency tracheotomy to assist him in breathing.  He also has a feeding tube in his stomach and will have it until he is able to have his first reconstructive surgery on his mouth.  That surgery cannot take place until he is roughly 9 months to one-year-old.

In addition to those issues, Jamarius has a small amount of bleeding on the brain and doctors have noticed what they suspect to be seizure activity that they are monitoring with regular with MRIs.

If you'd like to contribute to the fund to assist in Baby Jamarius' treatment, CLICK HERE!  The family is hoping to raise $5000 for their Wonder Warrior.


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