Kristina and David Reid with their three-year-old son Liam, in their Whitby home.
Credits: Veronica Henri/QMI Agency
There's great news and bad news on little Liam.
Faithful readers will recall the story of the three-year-old Whitby tot's ongoing battle with OHIP over payment for out-of-country treatment to save his sight.
Liam's parents, Dave and Kristina Reid, came to Queen's Park in May, asking Health Minister Deb Matthews for OHIP to pay for Liam's treatment with Dr. Michael Trese at Beaumont Hospital in Detroit.
Liam suffers from Persistent Fetal Vasculature Syndrome/Norrie's disease, a condition so rare there are no global statistics on it.
Treatments cost around $5,000 each for Liam to be examined under anesthetic.
Dave and Kristina, who have two other sons, have already spent $45,000 of their own money on treatment and had to cancel an appointment in April, because they just couldn't afford it.
So far, OHIP has been unrelenting in saying "No," to the Reids.
With that door slammed in their faces, in desperation, the Reids turned to the Sun for help.
And you, gentle readers, proved you have hearts of lions. You came through where the bureaucrats dropped the ball.
Thanks to your generosity, the Reid's received enough money for one Evaluation Under Anesthetic (EUA), which happened earlier this month.
"We will probably always be in limbo when it comes to Liam and his treatment," Kristina explained in an e-mail.
"Since it all depends on the progression of the disease and treatment is lifelong, we'll never really know how much funding is required. We'll just live this journey one treatment at a time," she said.
The Ministry of Health has told the family Liam doesn't, "fall within the parameters" of the out-of-country funding program.
A member of Matthews' staff has told them they're "working" to find a solution, but the family isn't optimistic. And they're frustrated that another family is receiving the same treatment in Detroit - and having it paid for by OHIP.
"Really, in Liam's situation, what else was available to him other than the out-of- country funding program?" Kristina asked.
The family has been forced into the extra expense of hiring a lawyer to appeal the decision. That could be costly, though, and land them with thousands of dollars in legal fees on top of their medical bills.
Whitby-Oshawa MPP Christine Elliott has gone to bat for them with the ministry, and the family's hoping she can cut through the ministry's red tape.
There is good news, though. And it's great.
At their appointment this month, Dr. Trese told the family he is VERY pleased.
"He actually said that he's seen eyes like Liam's left eye with the potential to read large print!" Kristina said.
The couple is over the moon at this news, and have started a new vision stimulation therapy in Detroit.
"Having lived without vision for so long, Liam has to be taught how to best use the little vision he has. And remember, this is the eye that Sick Kids insisted had no visual potential!" she added.
The family will have another follow-up with Dr. Trese in mid-August to check the pressure in Liam's left eye. It's elevated currently which could damage his optic nerve and retina. The next EUA is scheduled for spring 2013.
His right eye was operated on unsuccessfully at Sick Kids.
"We're looking into getting his right eye fitted with a scleral shell as this eye is shrinking. If not fitted with a scleral shell, the bone structure around his right eye will begin to deteriorate.
"The scleral shell will keep both sides of Liam's face symmetrical,' Kristina said.
So, take a bow, generous Sun readers. A little boy has a much brighter future as a result of your efforts.
It's just the politicians who are blind.
(You can still donate to Liam. Go to liamseyes.blogspot.ca)