Liam fights on
Dave and Kristina Reid have hit a brick wall waiting for OHIP to step up and pay for the treatment their son, Liam, desperately needs to save his sight.
Liam, 3, was born with PFVS Norrie’s disease - a rare retinal disorder that will cause him to go blind if he doesn’t get treatment from a Michigan specialist.
I wrote about the family three weeks ago after they came to Queen’s Park to plead their case with Health Minister Deb Matthews.
At that time, the Reids turned down generous private donations, saying they felt OHIP should pay for his out-of-country care. They had high hopes OHIP would come through - especially since another child in the province with the same disease is getting his treatment in Michigan paid for by OHIP.
They’ve already paid $45,000 from their own pocket for Liam’s treatment with world-renowned specialist Dr. Michael Trese. They had to skip an appointment with him at Detroit’s Beaumont Hospital in April because they didn’t have $5,000 to pay the bill.
With another appointment coming up next week, they’re hoping the folk who came forward to offer financial help when I first wrote about Liam will once again offer support.
“We have to take this into our own hands. We’re very afraid for the future,” Kristina told me.
They’re devastated their request has been denied. They were promised a meeting with Matthews - which still hasn’t happened, although the health minister called the family and urged them to return to the Hospital for Sick Children, where doctors performed an unsuccessful surgery on Liam’s right eye almost three years ago.
Health ministry officials are now insisting the family take Liam back to Sick Kids to undergo diagnostic tests that require an anesthetic - despite the fact that Liam’s doctor has told them there’s nothing more that can be done locally.
Liam’s treatment can cost as little as $5,000 a year for two evaluations under anesthetic, or as high as $30,000 a year if he needs retinal re-attachment or removal of scar tissue.
When he turns seven, it’s likely the examinations will no longer have to be done under anesthetic and the price will drop to $350 an evaluation.
The Reids are trapped in a Catch 22 bureaucratic nightmare.
They found themselves up against a government lawyer at an appeal hearing - forcing them to hire their own legal representation adding even more cost.
“They’re using our tax dollars to secure legal representation. My own tax dollars are working against me in this process,” Kristina said.
The couple has two other sons, Lukas, 8, and Brady 6. The emotional roller-coaster and financial burden is putting a great deal of stress on the whole family.
Recommending Liam for out-of-country care, their doctor stated, “Similar procedure is available in Ontario, however no further surgery is recommended locally to treat this patient because of poor prognosis. The disease is advanced and complicated.”
Officials grasped the first part of that sentence - “similar procedure is available in Ontario,” and ignored the qualifier to turn down their request for treatment.
Liam has already made significant gains with treatment in Michigan.
Dr. Trese re-attached the retina and enlarged the pupil - significantly improving his sight.
While they’re grateful to Sick Kids for repairing his cleft palate, they just don’t believe the hospital has the expertise Liam now needs. Why would their own doctor recommend out-of-country care if he could be treated here, they ask.
Matthews says her ministry is working “very, very diligently” to help Liam.
“I’ve spoken to the parents. They know there’s a process that needs to be followed and we’re working within that process,” she said in an interview.
The Reids’ MPP, Whitby-Oshawa Tory Christine Elliott is shocked the government has failed Liam.
“I am appalled that the Reid family has been forced to appeal to the public to receive the treatment that Liam rightfully deserves. The McGuinty government truly has lost its way, when it refuses to respond to the basic healthcare needs of its citizens,” Elliott said by e-mail.
“Liam and his family have already demonstrated that no one in Ontario can provide the care he needs. Now it’s time for his government and his healthcare system to provide him the support he needs. That’s what they’re supposed to be there for, that’s what the Reids deserve.
“He has an appointment scheduled with his specialist in the U.S. on July 9th. What more needs to be done?” she asked, adding, “Liam deserves the right to sight!”
Despite the recommendation by Liam’s doctor that he get out-of-country OHIP coverage, Sick Kids’ Chief Ophthalmologist Dr. Elise Heon insists the hospital has the expertise to treat Liam.
“Do we have the expertise in house to manage these cases? Absolutely,” said Heon, who admitted she has not examined the tot.
She said out-of-country referrals in such situations are “extremely rare.”
If you want to help Liam, go to: liamseyes.blogspot.com and click on Donate. You can also visit any Royal Bank branch with these details: Branch 06962, Bank 003, Account 5109293; or mail a cheque made payable to Liam's Fight, c/o Kristina Reid, P.O. Box 653, Whitby, ON, L1N 5V3