Angelle Bourdon and her daughter Melanie got the rare opportunity to meet another person with Morquio Syndrome earlier this summer, Jaime Adams (right). Adams was born in 1977 and diagnosed before she turned four years old.
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A small Cornwall girl with a rare disease found a kindred spirit last week.
After a newspaper article ran about a fundraiser for Melanie Bourdon and her cousin Aden Racine who have both been diagnosed with Morquio Syndrome, Jaime Adams contacted this paper and asked to be put in touch with the family. Adams herself was diagnosed with the genetic condition.
In 1980, when Adams was just three, her parents found out something was not right when an optometrist discovered some clouding on her cornea. By the time she turned four, they knew for sure she had Morquio.
Since then she has had a number of surgeries starting at age four and continuing on until she was 20.
“My doctor’s name was Dr. Steven E. Kopits, a pediatrician in Baltimore, Md., at the St. Joseph Hospital who was the expert in the field of Little People,” said Adams. “Morquios from around the world used to go see him. Ethiopia, United Kingdom, United States and Canada. Those were only the ones I knew of. If his patients weren’t able to go see him he would go to them.
“He was the first doctor who would speak directly to me and not to my parents. He cared what I had to say.”
The first time Adams met with another Morquio patient was when she was nine years old.
“There were only about 13 of us in Canada when I was younger,” she said.
Adams said her condition did cause a lot if issues, but she comes from a close-knit family and is very close to her twin sister. Despite having what some would think as a disability, Adams went to St. Lawrence College and worked for a while at Teleperformance, making Cornwall her home for 13 years.
She is currently working on an autobiography of her life growing up with Morquio.
“(It) would go into greater detail of bullying, emotional breakdowns, surgeries, why we took the American route, as well as discriminations,” she said.
She is striving to be as independent as possible, living in an apartment with a dog and a parrot and is starting a new online shopping website www.adamsflash.com. She is also in the process of trying to get her driver’s licence.
Meeting with the Bourdon family was a good thing for Adams.
“I was a lot more confident than I usually am,” she said. “I normally clam up.”
As for Angelle Bourdon, Melanie’s mother, she said she found Adams to be inspirational.
“I had the pleasure of meeting a beautiful soul,” Bourdon said in an email. “It saddens me that she grew up in a time when individuals with severe disabilities were discouraged from living their dreams. She gains a part of my heart today and makes me a better advocate.”
Adams said she will continue to stay in touch with the family and said they are now Facebook friends.
If Adams had one message to send out to the world, it would be this: “If you have a dream hold on to it. Don’t let anyone tell you you can’t for you just never know.”
By Lois Ann Baker, Cornwall Standard-Freeholder
SOURCE: http://www.standard-freeholder.com/2014/07/18/hold-on-to-your-dreams—adult-living-with-morquio-meets-cornwall-area-child