"Donate what you Can to cure GAN."
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Laurie Rae
- Female
- Morewood, Ontario
- Canada
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hello. It's Lori Sames here. I regret that I never find the time to visit the Forum and see who is new. Magaen usually fills me in when a new GAN family finds us. I wasn't aware of you until just now. Please tell me about Tanya and Julie. Please e...
Hi Renee, nice to meet you and happy to be here. My daughter Tanya has limited use of one hand and her other hand still functions a little. I know you say you can't be taken out anywhere but if you have a patio/deck to be outside on sometimes, may...
Comment Wall (2 comments)
- At 2:43pm on June 21, 2009,
Magaen Bates said…
- Hi Laurie Rae
I am putting together a GAN registry. Will you please send me all of your contact info. name, numbers, email, home address, children's name and birthdates, and mutations if they have been sequenced.
Magaen (magaenbates@yahoo.com)
- At 2:15pm on June 3, 2009,
Mary Pizzurro said…
- Can you please send me your email at marypizzurro@yahoo.com
Thanks,
Mary
Profile Information
- About Me
- Parent of GAN Child
- About Me:
- Hi, I'm Laurie, mom of Tanya (20) and Julie (19). In 2005 I took the girls to see Dr. Vasquez at the Sick Kid's in Toronto and after 16 years of not knowing why my daughters are the way they are, he gave me GAN as the diagnosis. At first there was shock and then relief, I finally understood why they were not benefitting from all their therapy, GAN is gradual. Unfortunately, to this date in time, we cannot find anywhere to be tested. We did send bloodwork to Dr. Flannigan in December of 2005, through our neurologist in Ottawa and after months went by waiting and pressing our neurologist to contact him, it finally came to light that they had run out of funding and could not do the research. Since then my daughters have become adults and all our new physicians don't seem interested in pursuing this, just as none seemed interested through the first 16 years of their lives. I have joined the group because I need the support and I need to be able to talk with others about this degenerative disease that is affecting Tanya and Julie. I remain hopeful that we will find someone to test the girls, even if it means driving to Utah and directly to Dr. Flannigan and paying out of our pocket just to have confirmation and not continue on as we are, still living with the unknown. I am proud of my girls for all their achievements thus far and their determination and perseverance in everything they do.
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