My prayers were answered, says mom
A mother is “on cloud nine” after connecting with families dealing with the same rare and painful condition that her son has endured his entire life.
Tanya Dyer has been searching for a diagnosis for her 15-year-old son Tyrece since he was born and it was only in 2012 that he received the correct diagnosis — a connective tissue disorder called Arterial Tortuosity Syndrome.
The disorder can cause the connective tissues in your body, including your skin, organs, veins and tendons, to stretch, shrink or collapse.
Tyrece had his first operation at just six weeks old due to a collapsed pyloric valve and he has been in and out of hospital ever since.
Last year alone he had to take five medical trips abroad which, despite help from now defunct charity The Committee of 25 and Government medical insurance, have been financially crippling for Ms Dyer, who is a single mother.
The ATS gene — SLC2A10 — was only discovered in 2009 by doctor Bert Calleweart and the non-profit organisation Twist of Fate was subsequently founded to help families who were affected by ATS. The charity put together a conference that took place in June which, for the first time, brought together families and children dealing with ATS.
Ms Dyer, who works for the Bermuda Department of Corrections, took her son to the conference in Little Rock, Arkansas and said her prayers were answered.
She told The Royal Gazette: “I am so, so grateful for meeting these families, hearing their stories and telling them my story — I am still on cloud nine. When I walked in I was crying — it was like walking into family. People were hugging me, the kids were showing each other how stretchy they were [as a result of their condition]. It was amazing that they knew exactly what I had been through.
“We were talking about the cardiologists, the urologists, the X-rays, having to hold your child down when he is fighting, the MRI scans — it poured all over us. I think it has made a change to Tyrece. He agreed to have his pictures taken for this story — for him to agree to this I do believe it has helped him.”
Tyrece, a student at Berkeley Institute, suffers from the gastro strain of ATS and has tortuous arteries in his head and neck which could become an aneurysm at any time. He suffers acid reflux, bladder and stomach pain and joint issues. Three of his vertebrae are so close to his spinal chord that even a small impact could kill him.
He has had multiple operations including a knee operation to straighten his right patella and an operation as a baby to secure his stomach from a hernia. When he was a year old doctors also discovered he had a heart murmur — an extra sound heard during a heartbeat.
Tyrece must have echoes and EKGs every year, MRI scans every six months and has been seen by at least nine different doctors in the fields of gastrology, urology, cardiology, neurology, ophthalmology, paediatrics, orthopaedics and genetics. As the disorder was only recently discovered, Tyrece has been misdiagnosed on several occasions. When he was two-and-a-half years old he was diagnosed with Ehlers Danlos Syndrome and in 2010 doctors believed he had Kerataconis as his eyes were changing into a cone shape which affected his vision. As a result of his eye condition, he has been learning Braille with the Bermuda Society for the Blind as well as taking an online course funded the Bermuda Government.
Ms Dyer says that while life has been extremely difficult for her and her son, certain organisations have been able to help her along the way.
She does believe that more help is needed in the way of social services and counselling on the Island.
She said: “Tyrece has anger issues when he gets tired. We have Social Services and Adolescent Services and The Family Centre has helped but we need some buy-in from the public for this child.
“I want Tyrece to be able to go to college but with all the medical expenses it is hard to save for it. I have cut all expenses to a minimum to be able to take him away to hospital. I make myself sick worrying about it.
“The Committee of 25 have been amazing, The Department of Education has been excellent since preschool. I’m also grateful to We Care Paediatrics who air-vacced him out of Bermuda, and now Twist of Fate.”
Looking forward, Ms Dyer has high hopes for her son.
“I want to plan for his future. He is interested in gaming and IT, he may be very good at that. He loves Japanese cartoon movies and running — I say Tyrece take it easy! But he is still a boy, to look at him he looks very normal. He would like to do more but when you are chronically tired it is hard. It has been a journey and will continue to be a journey.”
• To learn more about Twist of Fate or to donate, visit; http://www.atwistoffate-ats.com