CDG Family

13 Feb

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.

4 Responses to “CDG Family”

  1. Jamie-Lynn February 13, 2011 at 5:26 pm #

    Fundraising ideas – For the MS fundraising for the medical treatment overseas we have had:
    *BBQ’s during the summer
    *Club 54 Night
    *Fundraising in the pubs (buy tickets for a prize)
    The MS Walk is a big thing, you could start your own Walk/Stair climb at Chedoke
    *Dinner hosting – instead of bringing a gift to the host people will donate money instead (MS and Cancer Society do this)
    *CN Tower Climb (I do it for WWF and I know United Way does it)

    If you need any help with some of these ideas let me know! I would love to help.

    Jamie-Lynn 🙂

  2. Tonya February 26, 2011 at 8:24 am #

    Melissa, we live in the best area for fundraising and a community that comes together to help one another out. Maybe you should have a dance!! Franc a.k.a my mom is a great help and loves a good ho down!! We have enough family in the area it would have a great turn out.
    Wish I lived closer and could help out!!
    Love ya, Tonya, Ava & Anthony

    • Little Ladybug Hugs February 27, 2011 at 6:08 pm #

      We’re so lucky to live where we do for that exact reason. We’re also trying to get a more accurate feeding pump. The one that is supplied is overfeeding her by 20mls a feed. One of the local community groups offered to help offset some to all of the costs for it if we can’t get insurance to cover it. Gotta love the mentality and generosity of the rural folk.

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