This blog site is intended to be an open message board for parents caring for children with Cobalamin Metabolism Disorders and pigmentary retinopathy. Hopefully a venue for the exchange of ideas and experiences will help foster a community of support for families who sometimes may feel alone in their efforts.
posted by Michael's Dad | 5:07 PM
8 Comments:
We all want to wish everyone a happy holiday season!!I hope that I will be able to share alot of good news in the beginning of the year about some of the fund raising efforts we have been pursuing. Until then,be merry!!!
You have no idea how excited we are to find a new post on this blog site from a family we have never met. We hope that through our efforts with Michael's Fund we can bring other families together that share this common experience of caring for a child who suffers from this rare disorder. My brother and I are actively trying to organize an annual Rock 4 Retinas concert at Lincoln Center with singer/songwriter Lisa Loeb. Our hope is that we can draw some well known celebrities to our cause and help in raising funds that would be directly used in labs dedicated to finding the correlation between Cobalamin C metabilism disorder and pigmentary retinopathy.
Are you aware of the recent NIH study? Please feel free to contact me.
What a wonderful website....extremely informative. I live in NH and have a 3 year old daughter with CblG (and 4 other unaffected children). We are headed to NIH in June for Dr. Vendetti's study and are thrilled that someone is studying these disorders....are you participating?? Thanks for the site. My very best to you and your family. Cricket Prevost
I found your website through seraching for Children with CblC on google's search engine. Our son was diagnosed at 4 months old. He'll be 3 on Tuesday. I'm glad to see that there are more parents out there linking up! We are located in Colorado, and our son sees the Metabolic doctors at Children's hospital Denver.
Hello,
We have a daughter with Cbl C. She just turned 1 and she has a twin brother, who is unaffected. I was hoping to speak with you further regarding Michael's Ophthalmologist, and thought maybe you could offer suggestions. Thanks,
HI, I saw your post on the OAA web site. we have a 3 year old son with CBLC. Sounds like they have similiar issues.I would like to know if some body can write me and
share this common experience of caring for a child who suffers from this rare disorder. and what kind of nutrition amounts and how often.What effects of CBLC has your child experienced? Our child is blind and has a trach,and is on a ventilater @ night. Hoping to hear from you soon. this is my
e-mal nat-nan@hotmail.com Wishing all families a Very Merry CHRISTMAS. nathans mom
So greatful to find a web site talking about Cblc. My daughter is 3 months old. And my husband and I are not sure what to expect. We have to other child that are uneffected.
Dear Christa
Thanks for checking out the site we are always thrilled when someone finds us.If you can think of anything we may be able to help you with just give us a shout.
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