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AshleyShelton 12-19-2012 12:41 AM

Gavins Story
Hello everyone. I was currently under the name Ashley Cameron but I had to update it. IM HERE TO HELP. I'm the parent rep for CMTC. My email has changed. It is now A lot of y'all have probably read Gavin's story. Well tomorrow he turns 5 and yes he has medical problems however nothing he can't live with. If anyone has any questions please fell free to ask bcz I have some answer's. I've spent Gavins life searching and questioning. I HOPE I CAN HELP YOU ALL.

abatie 12-19-2012 03:25 AM

Great to see another CMTC parent here. I was the only one active for a long time. I don't check in as often here anymore as it seems there are not a lot of people posting here. I have a daughter that is three with CMTC. I remember reading Gavin's story early on when Becca was first diagnosed.

AshleyShelton 12-19-2012 02:28 PM

I was one of the first parents willing to discuss CMTC on here but I never heard from other parents so I started looking and joining other organizations. However I decided to start posting here again n hopes that I could help other parents. Gavin turned 5 today and is doing pretty well. I'm here too answer any questions I can. Or just to give support so parents know there not alone. Our biggest worry with Gavin is the specialist from The Netherlands believe Gavin have CMTC but that its a new type of CMTC. Were just taking it one day at a time

abatie 12-19-2012 07:29 PM

Becca has also seen the doctor from the Netherlands. Becca had many complications when she was younger but thankfully some of those issues have started to resolve (including three holes in her heart). Are you in the Facebook group or registered on the USA site? The USA organization is working really hard to get people registered on our site so that we can share information and stories as well as support each other. I know that there are some glitches with it but it is being worked on. 10-13-2015 07:15 PM

Hi there. My son was just diagnosed with CMTC at around 12 months. His affected leg is one centimeter longer than the other. The markings on his leg are very faint pink - hardly noticeable. He is otherwise happy and healthy. He is almost 14 months old. I would love to hear from you about advice on this disease. The doctors in our area are not very helpful and we are not certain the diagnosis is even accurate. We are in Tampa, Florida. At this early stage, do you have any advice on how we should proceed? I want to do everything in my power to help my son and make sure we do not miss a step. Thank you! Jen

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