Little Ladybug Hugs

8+ hour waits in the ER’s, over a year wait to see specialists, even longer for MRI’s –  there is no doubt that the Ontario Ministry of Health has its flaws and like any government-run system, needs improvement.

Up until recently I’ve never really had any issues with the MOH(Ministry of Health) and how it runs our health care system aside from those mentioned. I guess I always thought that because I pay through the nose in taxes, that in turn go towards our health care system, that the majority of tests should be covered. After all I’ve been paying taxes for 15 years and shutter to think of what that amount is up to now.

Our genetic counsellor has been trying for nearly 6 months to have a particular test done for my daughter, and has been turned down again and again by the Ontario MOH. The most recent comment that was given was What difference will it make. (not an exact quote – but pretty darn close)

So I find myself now where as a Canadian citizen I never thought I’d be – writing letters to our local MP and government officials pleading our case and begging them to help.

This test may not heal my baby girl, sadly nothing can, but it may give us a peek through the window of her future. CDG is so uncertain it can be fatal to one child and then spare the next.

The mere fact that I have to beg to have this test done sickens me. Sure I could have the test done tomorrow – that is if I fork out over $10,000 to have it done. I shouldn’t have to though.

It’s not just me fighting this battle either – families everywhere are. Parents of children who have autism are fighting to keep or even get funding for therapy that could positively change their child’s life, elsewhere there are parents fighting to keep their rights and make medical decisions that they feel would be in their childs best interest.

I know I’m not alone, and at this moment all I can do is have hope and keep faith that one day hopefully in the near future I will make that woman at the Ministry of Health eat her words!

This morning started off like every other Sunday morning. Roll out of bed, prime ladybugs feeding pump, prepare and administer her meds, change her diaper, get her dressed. Typically from there, Sundays consist of playing, tummy time, singing songs, and just chillaxin’.

Today was a little different though – I had 30 emails from the CDG Family Network forum in my inbox all sent within 3 hours of each other. Once again my heart sank, this many emails usually means one thing. A beautiful 2-year-old boy passed away and is now a sweet little angel. It’s heartbreaking. Not only did this little boy leave the world far too early, he left it because of CDG.

The thing I found comforting was that within minutes of this mother letting us know, the entire CDG family pulled together and came to her virtual side. Families from all over the world struggling with the reality of this disorder, put everything in their own lives aside to support one another.

It’s incredible, and so rewarding to be a part of such a wonderful network/community.  Although I prefer to call them family, because to me that is what they have become. There is this instant bond that comes along with getting the CDG diagnosis. Heck even before my ladybug was diagnosed I reached out to the CDG Family Network for advice and they were there for me.  We are just like any other family – there for each other through the good and bad times. I’ve received many words of encouragement from our CDG family when things get tough, and they are usually the first to shout hooray when we finally reach those special milestones that at times seemed  far out of grasp.

That’s why it is so hard when I hear that yet another child has passed away in our CDG family. Just for one moment imagine what it would be like to lose a family member a month for the past 4 months. Even though I’ve never actually met these children in person every single one no matter where in the world hold a very special place in my heart.

When I first found the CDG Family Network site one of the things that caught my attention was that they held a conference for the families to gather and speak with doctors and scientists from around the world. I have been looking forward to attending this conference for months even planning our summer holidays around it. But, like everything else, putting together such a conference requires money. In fact, the conference will not be happening this year unless the CDG Family Network can raise the funds for the venue, and speakers to attend.

I think this is the perfect time to start giving back to a family that has been there for us from the beginning.

I’m open to any and all suggestions for fundraising ideas to help bring the CDG Family Network Conference back to life.