Another life/child, Worth every penny

We had the opportunity to attend the National MPS conference in Alliston ON this past weekend.  We weren't going to go at first because Daphnie had her year end ball tournament on the same weekend.  When we learned that she could be done playing early on Saturday, we decide to book the hotel room and register for at least half of the conference that we could attend.
BOY are we glad we did.
We met a great family from Saskatchewan including 3 year old Violet who made the journey over to Ontario mostly for this conference and the opportunity to meet and network with some other MPS affected families, specifically the More's and the McFadyen's.
This young family just received the devestating diagnosis for their darling daughter this past February.  Since then they have been trying to sustain the funding needed to get enzyme replacement therapy for Violet in Saskatchewan.
Flashback to exactly 1 year from now.......  We were right in the middle of our quest for the very same thing here in Ontario.  We had the benefit of a precedent set by Isaac.  Violet doesn't have that 'luxury' in their province but she does have all of us on her side and in her corner 100%.

See in the photo, taken at the conference of the 3 children affected, standing together, already becoming friends.  These 3 share something in common with each other that only 6 others in all of Canada share.  Each one is very special and worth every penny.
If it comes to it again, we are prepared to launch a very public campaign to secure Violet's funding, but hopefully Saskatchewan won't be as difficult as Ontario was.
All the best as always.
The More's.

Meet Terry

Hi Everyone.  Please click the link below and read a story written about Jasper's friend Terry and the great work/effort he's put in so far toward making our life easier and better particularily while we're at the hospital, but it has an impact even when we're not.
Jasper loves Terry and I dare say the feeling is mutual.....!

http://www.lhsc.on.ca/About_Us/LHSC/Publications/Features/July13.htm

We are most grateful and very proud to express our gratitude.
We did get some 'sad' news this week while at treatment though too.  We learned that Jasper's favourite nurse (so far), Cathy is leaving the PMDU area of the hospital to accept a different position.
Cathy was one of the first nurses we had when we started, and Jasper quickly became comfortable with her, her efficiency and her methods.  And he always looks forward to visiting with Cathy.
We will miss her dearly at treatments, but of course wish her the best in her new position.  I'll try and get a photo of them both to add to the blog.
God bless all the good people at LHSC.

I Wanna Live

   

A few years ago Pam and the kids gave me John Denver's 'Essential' greatest hits double cd as a gift. I had seen a special on PBS with him and was reminded, how many of his songs I recognized and liked. But it wasn't until Jasper was first diagnosed with MPS that I realized what this song of John's really meant to me. I was driving home from work one day in the spring of 2011, not long after we learned MPS was part of our lives. With John's CD in, this song came on. It really hit me hard hearing it for the first time since learning of the diagnosis. With all the new (incomplete) information running through my heart and my mind at the time, the lyrics in this song made me cry for Jasper's sake. He begins by referring to all the hardships that kids are born and raised in places less fortunate than ours, although he never mentions illness exactly, you know it has to be included as well. But was really the chorus that made me weep for Jasper.

"I want to live I want to grow,
I want to see I want to know,
I want to share what I can give
I want to be I want to live"

All we ever ask for when children are born is that they're healthy. Doesn't matter what sex, or how big, or how much they weigh, 'as long as they're healthy.' Hearing the words in this song, and having a child with a degenerative, life threatening disease really make you realize how much you just want your children to be alive, to be happy and healthy.

Please have a listen, think of Jasper, and all the other kids affected by disease and tragic conditions as well.

Thanks.