Little Liam Reid turns three in a couple of weeks.
There’ll be toys and cake, for sure, but his parents, Kristina and Dave, are desperately hoping for a special gift an uncaring health-care bureaucracy has so far denied this tiny tot — the gift of sight.
Liam has a rare disorder that’s causing him to go blind.
Diagnosed just three-and-a-half months after birth, Liam’s had one unsuccessful surgery at the Hospital For Sick Children that resulted in him losing sight in his right eye.
Surgeons at the hospital have told him there’s nothing further they can do, so Liam’s last hope is for surgery with Dr. Michael Tracy and Beaumont Hospital in Detroit.
Tracy is a world leader in treating Persistent Fetal Vasculature Syndrome/Norrie’s disease, a condition so rare there are no global statistics on it.
You’d think it would be a no-brainer, in a province that prides itself on its health-care system.
Take one small child, add a rare disease that threatens to take his sight. Mix with bumbling bureaucrats who’d rather piddle $1 billion down the drain on eHealth and squander millions at Ornge – and what do you get?
A heartless, hopeless decision that sent one small, lovely family into the depths of despair.
Kristina and Dave have already spent $45,000 of their own money getting Liam the treatment he needs in Detroit. That treatment restored some of the sight in his left eye. They had to skip an April appointment because they didn’t have $5,000 to pay for it.
"We’ve been told by our Ontario specialists that there’s nothing more that can be done locally because Liam’s disease is so advanced, so complicated and rare," Kristina told me.
What’s infuriating is that there’s only one other child in the province with the same condition – and that child gets treatment in Detroit – paid for by OHIP.
The Whitby, Ont., family were at question period Thursday to hear their MPP Christine Elliott ask Health Minister Deb Matthews why their appeal for funding has been turned down flat by the Health Services Review and Appeal Board.
"I think it’s only fair that Liam get the same opportunity for sight in Ontario as the other child who’s receiving treatment from Dr. Tracy," Elliott told me. She’s talked to Matthews and sent her four letters about Liam.
Matthews talked briefly to the parents and promised to meet with them to discuss Liam’s plight.
She called him a "delightful little boy" after their chat.
But will OHIP fund his treatment?
"I think any reasonable person would understand that the minister can’t be making decisions on a one-off basis based on who comes to question period," she told me.
"We have a very robust out-of-country process, but we do restrict out-of-country to cases where we don’t have the expertise here," she said.
The more surgeries a doctor performs, the better the outcome. With rare diseases, patients often have to travel to a doctor who performs a large number of surgeries in order to have a successful outcome.
Sick Kids hospital says they can do no more. Do we really have to study this any further?
Here’s what Matthews should do: 1. Tell the Reids to take Liam immediately to Detroit for treatment – and the province will pay.
2. Reimburse them the $45,000 they’ve already paid – and guarantee to pay the cost of future treatment.
Why? Because I vow I’ll hound her every day until little Liam gets the treatment he needs.