Tyrece ATS Belgium Trip

My son Tyrece Dyer was born August 24th, 1999.

When he was 6 weeks old he was projectile vomiting, concerned I contacted the district nurse who picked us up and took us to the Hamilton clinic.  We were immediately sent to the hospital.  He had his first operation at 6 weeks on his stomach due to a collapsed pyloric valve. 

At 12 weeks old, he was projectile vomiting again.   An x-ray showed that his stomach was moving upwards towards his lungs.  He was air ambulanced to Boston Children’s Hospital where he had another operation (to secure his stomach from a hernia).  Had his then pediatrician not acted – his lungs could’ve collapsed.

 His first year of life,  he was in constant pain, he had a lot of difficulties with his stomach.   He couldn’t talk and he was very frustrated.  He would yell a lot.   He had speech therapy as well as other behavioral and cognitive therapy from the age of 2 years old.

We returned to Boston the following year in November (2000) for a follow up and it started then, the Doctors realized something wasn’t right.   He had developed a heart murmur.     He began seeing a multitude of Doctors.   He was diagnosed clinically with EHLERS DANLOS SYNDROME (a connective tissue disorder that causes connective tissue to stretch or shrink) His condition affects his vascular organs.  This is a new (1960ish diagnosis and mortality is an issue – I was told that he could have an aneurism of any of the stretched arteries, a torn colon, heart problems and joint issues.  

I have been travelling to Boston since then a minimum of twice a year for the past 17 years.

One year we were in Boston 5 times.  Our stay is usually 1 week but once it was 1 month (when he had a knee operation).

He is seen by at least 9 or more Doctors during these trips.   

In November 2010, he was also diagnosed with Kerataconis (cornea ecstasia)  of his eyes.  This disorder causes the eyes to change in the  shape into a cone and one cannot see.  This condition usually occurs in persons from ages 19 – 30 years old.    He was fitted with glasses but as his eyes continued to change, in 2012 he could no longer wear glasses and now can only wear hard contacts.   The hard lenses help to slow this deterioration of his eyes by keeping the corneas from bulging outwards.

In Nov 2013, Dr. Katherine Colby (Massachusetts Eye and Ear Institute),  referred him to get an eye surgery called CROSS LINKING as his right eye is progressing outward very quickly.   This surgery is not covered by insurance in the USA so we had to go to Canada. 

His genetic Doctor at Boston Children’s Dr. Sharon Smith after doing her research in regards to his eye condition - did a specific blood test and the result was a confirmation that my son has a gene (SLC2A10) that is very rare and the Syndrome is confirmed to be ARTERIAL TOURTOUSITY SYNDROME– it is still a connective tissue disorder, however more rare than the previous clinical diagnosis.   (See attached information).  

As a result of his eye condition he has been learning Braille with Mr. William Ridley of Bermuda Society for the Blind.   He will be doing an online course in Braille which is funded by Bermuda Government and he will be certified in a foreign language at his completion.  Update - he achieved 2 credits towards his High School Graduation in June 2017.

Tyrece is now 17 years old and continues to be seen by the following; Gastrology, Urology, Cardiology, Neurology, Neurosurgery, Ophthalmology, Pediatrics, Orthopedics, physiology, psychology, Genetics and now Pulmonary.  He still has MRI scans every 6 months due to arteries stretching in his head as well as the 3, 4, and 5 disc in his neck is almost touching his spinal cord.  Because of this he was referred to a Neuro Surgeon January 2011 who follows up as needed.  Injury can cause stroke, he can be paralyzed or worse. 

He had the CROSS LINKING procedure in Toronto by Dr. Ali June 23 2015.   He is seen at Mass Eye and Ear and wears a scleral lens in his right eye and a rigid lens in his left.   His lens have changed shape and as a result new lens have to be issued.   

His eyes is a concern due to the ATS condition.
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Julie Zippay

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