It's been over two years now since our lives were turned up-side-down - two years of learning, adapting, struggle, sorrow, fear, confusion...and eventually - acceptance - and peace. Finally we feel 'regular' again - just like we did in the days before Liam's birth before we were swept up into this flurry of the unknown.
I still to this day follow blogs of other moms living lives with special needs children - and I still find myself wiping away tears as I read the words that so often mirror my very own thoughts. But more and more each day just feels 'normal'. Really?
We just returned from a routine eye exam in Detroit with Dr. Trese. For some reason I always feel drained - physically and especially emotionally after I return home from those appointments. I feel deflated. These appointments remind me that Liam IS blind and as his mom, his protector, his biggest advocate, there is NOTHING I can do to change it. As though all the acceptance I've built up in the months between appointments is somehow washed away when I sit in Dr. Trese's waiting area and I'm forced to listen to the stories of mom's who are 'just devastated' about their son/daughter with limited vision in ONE eye. I know that to that mom YES it must have been devastating to hear your child is blind in ONE eye - but - they WILL read print, they WILL drive, they WILL nagivate without a cane, they WILL see the resemblance between themselves and their siblings, they WILL know colours and watch the leaves change in fall, they WILL see the twinkling lights on your Christmas tree and watch the sun rise and set - they WILL see your face and know you are there in a crowd of people just by catching a quick glimpse from far across the room.
Just when I think I'm there - that I've 'accepted' that my baby is blind and there is nothing I can do to change it - boom - I'm overwhelmed with grief again - waking in the middle of the night with an overwhelming ache in my heart.
So - are we there yet? Well, the denial/semi-suicidal days are a distant memory...but as for complete acceptance - I think I have a way to go yet.
Tuesday, October 25, 2011
Tuesday, October 18, 2011
Just the two of us...
It was through pure chance that we learned of another Ontario family with a child suffering from PFVS/Norrie's. Until that day in May 2011, I believed we were the soul family residing in Ontario with a child blind from this disease... Through a contact at OFVIC (Ontario Foundation for Visually Impaired Children), I learned that another child residing in Ontario with the same diagnosis as Liam, was successful in receiving Ministry funds for his out of country care with our surgeon ... Dr. Michael Trese!
Liam's applications to OHIP (Ontario Health Insurance Plan) for treatment with Dr. Michael Trese have been denied since December 2009. And how can that be when the ONLY OTHER PERSON in all of Ontario suffering from PFVS/Norrie's has been receiving funding, for the same procedures, with the same doctor, for the past 7 years!
Our MPP Christine Elliott has been supporting us since June 2011. Even after sending 3 letters directly to the Minister of Health, Deb Matthews, Liam is still being denied OHIP funding. Ms. Elliott's most recent letter of September 9th remains unanswered. In this letter, Ms. Elliott asks the question, "How is one family covered and the other not...for the same disease, with the same out of country treating physician, for the same procedure?"
The "other family" (who have asked to remain anonymous for fear of losing funding), were successful in receiving out of country funding only after their MP approached the Minister of Health directly with a phone call all those years ago. For 7 years one little boy has received out of country care that OHIP has funded - and for the past 2 years we have struggled endlessly with OHIP to support our child, Liam, without success.
The taxpayer dollars that have been waisted away at the Ministry's hand include 3 pre-hearing conference calls, an oral hearing, a 3-member Health Services Appeal and Review Board panel with hearing room fees and a court reporter, plus deliberation time which can run into weeks, payment by the Ministry at a rate of $250 per hour in their search for "a local expert" that never materialized - but 3 Ontario physicians all benefited from the $250/hour payment for their time, although no Ontario 'expert' ever did attend or present evidence at our oral hearing. When the sole doctor - a cataract specialist??? (Liam requires a retinal specialist) learned that Dr. Trese would appear via conference call to present evidence at our oral hearing, the 'cataract specialist' suddenly changed his mind' about appearing stating 'he feared legal action'. He backed out just 3 days prior to the hearing. Makes you think doesn't it?
Even at the point the Ministry was made fully aware of the existence of another child residing in Ontario with the same condition benefiting from funding with Dr. Trese in Michigan, Liam's most recent application was STILL denied - and ironically, Liam's application mirrored the other child's application - whose appointment in Michigan was just 2 days after Liam's appointment. His appointment was funded by OHIP, Liam's was not.
Dr. Trese actually commented that his patients living in communist countries have an easier time being funded with Dr. Trese for such rare retinal conditions as Liam's. Italy's government has a contract with Dr. Trese so that those children living in Italy and surrounding areas with exceedingly rare retinal conditions can be afforded the BEST possible care with the BEST chance of success. Meanwhile we sit in Ontario still struggling with OHIP for funding that should have been provided to us at the start of this journey - when Liam still had vision in his right eye - before it was taken away by a botched surgery at Sick Kids Hospital on November 6th, 2009. By a doctor who had seen just 3 other cases in his lifetime - a doctor who should have known better than to touch Liam's eye, the eye diseased by a condition he was unfamiliar with, and lacked the expertise to treat.
It still keeps me up at night - the fact that Dr. Trese is so well known in the pediatric retinal world - that's Liam's case is so rare that only 2 Ontario children suffer from it - that we should have been made aware of Dr. Trese's existence - that another child was afforded this expertise that was/is funded through OHIP - that Liam, 2 years later is still fighting for the same care another Ontario child has had for 7 years. Liam's world could have been so much more 'colourful'...
Liam's applications to OHIP (Ontario Health Insurance Plan) for treatment with Dr. Michael Trese have been denied since December 2009. And how can that be when the ONLY OTHER PERSON in all of Ontario suffering from PFVS/Norrie's has been receiving funding, for the same procedures, with the same doctor, for the past 7 years!
Our MPP Christine Elliott has been supporting us since June 2011. Even after sending 3 letters directly to the Minister of Health, Deb Matthews, Liam is still being denied OHIP funding. Ms. Elliott's most recent letter of September 9th remains unanswered. In this letter, Ms. Elliott asks the question, "How is one family covered and the other not...for the same disease, with the same out of country treating physician, for the same procedure?"
The "other family" (who have asked to remain anonymous for fear of losing funding), were successful in receiving out of country funding only after their MP approached the Minister of Health directly with a phone call all those years ago. For 7 years one little boy has received out of country care that OHIP has funded - and for the past 2 years we have struggled endlessly with OHIP to support our child, Liam, without success.
The taxpayer dollars that have been waisted away at the Ministry's hand include 3 pre-hearing conference calls, an oral hearing, a 3-member Health Services Appeal and Review Board panel with hearing room fees and a court reporter, plus deliberation time which can run into weeks, payment by the Ministry at a rate of $250 per hour in their search for "a local expert" that never materialized - but 3 Ontario physicians all benefited from the $250/hour payment for their time, although no Ontario 'expert' ever did attend or present evidence at our oral hearing. When the sole doctor - a cataract specialist??? (Liam requires a retinal specialist) learned that Dr. Trese would appear via conference call to present evidence at our oral hearing, the 'cataract specialist' suddenly changed his mind' about appearing stating 'he feared legal action'. He backed out just 3 days prior to the hearing. Makes you think doesn't it?
Even at the point the Ministry was made fully aware of the existence of another child residing in Ontario with the same condition benefiting from funding with Dr. Trese in Michigan, Liam's most recent application was STILL denied - and ironically, Liam's application mirrored the other child's application - whose appointment in Michigan was just 2 days after Liam's appointment. His appointment was funded by OHIP, Liam's was not.
Dr. Trese actually commented that his patients living in communist countries have an easier time being funded with Dr. Trese for such rare retinal conditions as Liam's. Italy's government has a contract with Dr. Trese so that those children living in Italy and surrounding areas with exceedingly rare retinal conditions can be afforded the BEST possible care with the BEST chance of success. Meanwhile we sit in Ontario still struggling with OHIP for funding that should have been provided to us at the start of this journey - when Liam still had vision in his right eye - before it was taken away by a botched surgery at Sick Kids Hospital on November 6th, 2009. By a doctor who had seen just 3 other cases in his lifetime - a doctor who should have known better than to touch Liam's eye, the eye diseased by a condition he was unfamiliar with, and lacked the expertise to treat.
It still keeps me up at night - the fact that Dr. Trese is so well known in the pediatric retinal world - that's Liam's case is so rare that only 2 Ontario children suffer from it - that we should have been made aware of Dr. Trese's existence - that another child was afforded this expertise that was/is funded through OHIP - that Liam, 2 years later is still fighting for the same care another Ontario child has had for 7 years. Liam's world could have been so much more 'colourful'...
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| L-R: Lukas, Liam and Brady. I'm so blessed to have these 3 angels in my life! They are so luck to have eachother! |
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