Local boy headed to Illinois to see specialist for rare condition
© Submitted Photo
Drew Lewis holds up the poster that tells people more about his rare condtion – OMS – and asks people to help him with his trip to Illinois next month to see a specialist in the disease.
For the typical four-year-old, life is a wide-open book full of new wonders, adventures and sensations just waiting to be explored.
They’re at the cusp of their toddler years, and are heading into the brave new world that is leaving mom’s side, and heading into their educational careers. They’re caught up with toys, cartoons, and whatever new fascinations await them around the corner.
For Drew Lewis, just about all of that is true – but to say he’s a typical four-year-old is a bit of a stretch.
Drew is from Baie Verte, and suffers from Opsoclonus Myclonus Syndrome, (OMS) a rare neurological disorder that affects just one in every 10 million people per year.
The causes of OMS are still unknown, and since being diagnosed when he was 19 months old, Drew has been back and forth to doctors in St. John’s for treatments and tests.
“Originally, he was misdiagnosed with something else,” said his mother, Terri-lynn. “Then as his symptoms progressed, he was eventually diagnosed with OMS.”
The symptoms of Drew’s condition are numerous. They range from involuntary movements, to lack of balance, poor eyesight and OCD.
All of those and more, says Terri-lynn, make Drew’s life a challenge indeed.
“Drew has his challenges, definitely,” she explained. “He has a lot of trouble walking – he can’t go up steps at all, and he’s constantly off balance. His eye sight is also greatly affected because of cataracts, and in the past while he’s been having a lot of OCD-related behavior.”
Trouble sleeping, growth irregularities, speech problems, and irritableness are also common symptoms. What may be common in some toddlers, are increased greatly in Drew because of his OMS.
“Sometimes when we all try to go to sleep, we find our body jumps,” said Terri-lynn. “For us, it happens once and we’re fine –but for Drew, he’s like that all night long, so it makes it hard for him to sleep.”
As for the treatment of OMS, Drew is a regular visitor at the Janeway Children’s Hospital in St. John’s for treatment, but has now gone just about as far as his doctors here in the province can take him.
“The doctor’s here have been fantastic, but there’s only so much they can do – there’s not an OMS specialist here, so we’re sort of limited in that regard.”
That’s why the Lewis’ have sought help outside of the province, and outside of the country.
Dr. Michael Pranzatelli is a OMS specialist in Illinois. He’s world renowned for his work with the condition, and it’s him that the Lewis’ are headed to see in April.
“We want to get a second opinion, because it looks like the next step for Drew is to go on a new drug which could have some very serious side-effects for children,” explained Terri-lynn. “That’s why we want to know if there are any alternatives, and if there’s anything else we can do.”
The Lewis’ are hoping that Dr. Pranzatelli can tell them that.
However, the cost of the trip isn’t going to be cheap, and everything associated with it is coming out of the Lewis’ pockets.
“To just see the doctor is over $11,000 dollars,” explained Terri-lynn. “That doesn’t count airfare, hotels, meals, taxis, and everything else associated with it.”
None of the trip is being covered under MCP. However, the Lewis’ have received an overwhelming response from friends, family, and total strangers who want to help out with the expenses.
“People have been so kind, and we’re very thankful,” she said. “We’re getting calls from all over, and people have heard about Drew and are asking how they can help, and what they can do. It’s really amazing.”
A fundraiser on Tuesday at the Kincentre in Baie Verte is planned, where folks can come by, have some food, and meet Drew in person.
If you would like to help support Drew’s trip, you can also get in contact with the Lewis family at (709) 532-2230 or email firstname.lastname@example.org