Looking for a Diagnosis at Toronto SickKids
Once again, the communities of South Dundas and South Stormont are invited to come together to do what we do best…help a neighbour/friend who is in need. In this case, it is a 13-year-old local youth who is progressively losing his eyesight.
The son of Melanie and Brent Whitford, Jeremy, has experienced a decline in his eyesight pretty much from birth says his mom.
As a toddler, Jeremy appeared in need of a nap. “But it wasn’t that he was tired, it was his eyelids,” explains Melanie.
Jeremy was born with severe bilateral ptosis, hyperopia and left esotropia which in simple terms means he was born with very droopy eyelids and a left eye that was turned inwards. In the case of ptosis, the muscles that control the eyelids do not function properly.
When Jeremy was two, surgery was performed to correct the ptosis and it was hoped that would be it. But it hasn’t been.
Every year, Jeremy’s eyesight declines, and doctors have been unable to provide the Whitford family with a diagnosis.
“We’ve been to doctors in Cornwall, to specialists in Ottawa and to the Ophthalmology Department at CHEO,” says Melanie. “Jeremy has had MRIs, CT Scans, and all kinds of testing and still nothing.”
“Every year since he got his first pair of glasses at age two, we have gone through a pair of glasses, some years it was two. The lenses just keep getting thicker.”
“In August 2011, Jeremy lost most of the sight in his left eye. All he sees now through his left eye are shadows, and he has only five percent vision left in his right eye.”
“The doctors can’t figure it out, and every time we go it gets lower and lower. They can’t tell me why, and they can’t tell me if it can be fixed. Now it is migraines that he is getting, and they are getting worse.”
Melanie explains that what Jeremy currently sees is what a person with good vision would see if they smeared vaseline on their eyes.
The surgery, when he was two, corrected the eyelids by lifting them into a permanently open position. As a result Jeremy sleeps with his eyes open, and when a migraine comes on he will disappear to his darkened room where he will cover his face to block all light from his unprotected eyes. The migraines are becoming much more frequent.
Ball caps protect Jeremy’s eyes from bright sunlight, and he must keep his eyes lubricated at night to prevent them from drying out and becoming painful. His eyes also tire easily.
Melanie is determined to get a diagnosis for Jeremy which she prays will lead to a treatment to slow or stop the problem.
“At least, if we could get a diagnosis we could get help. Even if we can’t afford it, I will find a way. Right now, they figure that by the time he is 25, if we don’t get a diagnosis, his vision will be gone.”
The Whitford family was hoping the road to a diagnosis would begin last Wednesday, when they travelled to SickKids in Toronto, for an appointment with the Neuroptamologie department there.
“The Morrisburg and District Lions are paying our trip to Toronto, everything,” says Melanie. “I cried and cried when they told us, because I thought we would have to borrow the money for the trip. Bob Bergland, Keith Robinson, they have all helped out. They are all amazing.”
Also amazing are a group of friends and family who have organized a benefit dance at the Morrisburg Legion on February, 16 to help raise money for Jeremy’s specialized equipment needs at home and future travel and medical costs.
For more information on the benefit dance, see the accompanying story.
Growing Up With Vision Limitations
Thirteen-year-old Jeremy Masse-Whitford is a happy young man who hasn’t let the steady decline of his eyesight get him down.
He loves to cook and claims to be “a better cook than my mom Melanie because I use my sense of smell and taste.”
A grade eight student at St. Mary-St. Cecilia School in Morrisburg, Jeremy enjoys pickup hockey and is a member of the South Dundas Minor Soccer Association. He plays the sports he can with his limited vision and assists the teams he can’t.
“But I would prefer to be able to play all the sports.”
A special friend in Jeremy’s life is Leroy, a two-year-old Chocolate Lab, who was purchased two years ago and is being trained to assist Jeremy, particularly for his needs in the future. Currently, as Jeremy can still see reasonably well thanks to his glasses, Leroy is put to work fetching pucks.
Growing up hasn’t always been fun and games for Jeremy.
He speaks of how he was bullied by the older kids. “The last couple of years though have gotten better.”
St. Mary-St. Cecilia School in Morrisburg has been very progressive for many years in its anti-bullying programs and Jeremy’s classmates have grown up with him and come to naturally accept his limitations.
He worries, however, that the bullying will resume when he heads off to high school at St. Joseph’s in Cornwall.
Jeremy has also had to work extra hard and extra fast to stay on top of his schoolwork; and that too, he suspects will be more difficult when he gets to high school.
The Catholic District School Board and St. Mary-St. Cecilia have been really good, says his mom, Melanie. “They had a hearing and vision resource specialist come in who got him all the specialized equipment he needs.”
Special equipment includes a laptop with zoom text and various assistive devices including a Dome Magnifier (enlarges text) and a Daisy Mae Audio-Book player.
According to Melanie, the SMSC teachers and principal Joy Martell have all been great. The only problem is that “the specialized equipment is only available to Jeremy when he is at school. We have things sent to us on CDs, but we don’t have the equipment we need at home. The computer screens are bigger, the keys are bigger, everything is special, and it is very expensive. Just the Zoom Text program is $500. It’s crazy.”
With an increased work load that comes with high school, Jeremy worries about how he will be able to keep up next year without the means to complete his work at home.
Treatments, travel to medical appointments, regular replacement of eyeglasses at $500 plus per pair, and the dreamed of specialized school equipment for home means mounting bills for this young family. Jeremy also has a younger brother Tyson, 12.
February 16 Benefit Dance for Jeremy
A benefit dance to assist the Whitford family with the purchase of specialized equipment for Jeremy is planned for Saturday, February 16, at the Morrisburg Legion.
Pegged the Can You See Me??? Benefit dance, it will run from 6:30 p.m. until 12:30 a.m. The cost is $5 per person and the dance will feature non-stop music with the band Rolly and the Nighthawks and DJ Jamie Jarvos Entertainment.
“A lot of people are buying tickets,” says Melanie. “It’s been wonderful, even people who are unable to attend are buying tickets to help us out. We are trying to fill the hall.”
Thanks to a big response from the community, 25 items have been collected for a Silent Auction to be held at the dance.
A trust account has been set up in Jeremy’s name at Scotiabank in Morrisburg (Acct. #706020305286) to accept donations. Dance tickets can be purchased and Silent Auction items donated by calling Melanie at 613-543-0382 or 613-577-3332.