Approaching 4

In just 1 short month it will be exactly 4 years to the day that Liam entered our lives. It wasn't the typical delivery that all moms dream about. We knew Liam would be born with challenges due to the cleft lip and palate that was discovered in our 18 week ultrasound. None-the-less we celebrated as a family the arrival of our new baby boy. My family all came to visit - I'm sure with fear of how they would react at seeing Liam's baby cleft face for the first time. Nurses would parade into my room, I believed to get a look at "the baby born with the cleft". And as difficult as those first days and weeks were transitioning into a life with now 3 children under the age of 6 - we had the added struggle of  plastic surgery appointments, orthodontic visits, NAM fittings, the Haberman bottle (the only way Liam could drink was from a specialized bottle designed so that mommy squeezed the milk into Liam's mouth since he didn't have the ability to suck), the devastating news that our baby was visually impaired. As hard as those first few weeks were, little did we know we had an even bigger challenge lurking in the shadows.

In an even more evil twist of fate, we would not only have our shoulders saddled with the heavy burden of Liam's medical needs, we would have a 3 and a half year struggle with Ontario's Ministry of Health to secure financial support for Liam's out of country medical procedures.Funding that another Ontario child was receiving for the treatment of the same disease with the same out of country physician!

I remember the day I started preparing our initial appeal with the Ministry of Health in December 2009. I was sitting in a hotel room with my mom and my then, 5 month old son Liam who had just undergone the first of many surgeries with Dr. Michael Trese in Michigan. Little did I know it would be another 3 and a half years; 42 months, 3 of Liam's birthday celebrations; 5 filed and ultimately denied applications for out of country funding; countless conference calls with the Ministry of Health officials; an exhausting and complete sham of an appeal before the Health Services Appeal and Review Board; the services of a specialized lawyer to provide us with representation the ministry insisted we wouldn't require; direction from the Information and Privacy Commissioner in securing ministry documents under the Freedom of Information act that supported our claim another child was receiving provincial funding; communication with Ontario's Ombudsman in an attempt to right the many wrongs; countless meetings - telephone calls and emails with our local MPP, Christine Elliott; an eventual visit to Queen's Park to attend question period - Liam in tow - and a media scrum afterwards; personally meeting Minister Matthews and phone conversations on numerous occasions with the Minister, her chief of staff and countless other ministry officials; the onslaught of media coverage including local tv personality visits to our home; our interviews at the SUN media television headquarters; Christina Blizzard's unrelenting coverage of Liam's struggles; the Globe and Mail, and Toronto Star stories; an appearance on Canada AM and the Michael Coren show; and 3 radio interviews on Talk 1010 radio. All this while working full-time, meeting Liam's medical requirements and raising a young family!

Here we sit, finally successful - but my god, not without a lot of hard work, sweat and tears. We have been successful in securing support from the Ontario Ministry of Health for the coverage of Liam's out of country surgeries with Dr. Trese because - as I've said countless times in the past 3.5 years - and as evidenced by the unsuccessful surgery on Liam's right eye at Sick Kids - the expertise to treat this disease DOES NOT exist locally. Sadly, Liam has lost all vision in his right eye as a result of surgery performed at the Hospital for Sick Children - he will now wear a prosthetic shell to keep the structure of his eye socket in place as due to the trauma of surgery and build up of scar tissue, his eye is shrinking. This should never have happened. Thankfully though, he left eye, treated in Michigan under the skilled hand of Dr. Michael Trese has faired much better. His eye is healthy, his retina attached - his eye is growing and beautiful!


So for at least the next 3 year term - the ministry's arbitrarily imposed timeline - we can rest with the knowledge that Liam will be supported with ministry funding. We’re grateful to the ministry for finally supporting Liam, even if only for the next three years - and we’re hopeful the ministry will continue their support after the three-year term has expired, at which point Liam’s case will be re-evaluated. I do wonder though, how many other families in Ontario are experiencing similar struggles — some receiving funding while others are not.

Here's a link to Christina Blizzard's article published in the Toronto Sun April, 21, 2013.

Cutest kid ever, with a great looking red reflex
in his left eye!