Saturday, February 18, 2006

Update on My Sister’s Grandbaby

Thanks so much for all of the e-mails y’all sent filled with prayers and good thoughts for this darling little baby boy. His name is Travis. It breaks my heart to report that things haven’t gotten any better for little Travis. In fact, the doctors have taken away all hope. It’s doubtful he will live to see his first birthday. They do know what’s wrong with him now. He was born with something called Autosomal Recessive Cutis Laxa Type One. There are only a couple of hundred people in the whole world with Cutis Laxa, and his is the very worse kind. There is no cure and no treatment for it. It simply keeps on until the last of the fight is gone from the body it’s destroying. All the doctors can do is try to treat the symptoms and the damage and buy Travis, and his mother, more time.

I wrote in my blog a short while ago about how sad I was over losing one of my dogs. I can’t even guess at the amount of pain my niece is dealing with! Comparing the pain of losing a dog, even as much as I loved Red, to the loss of a child, seems like comparing a drop of water to the ocean. I know my brother died when I was ten. My mother died twenty years later, and she hadn’t gotten over his loss even then.

1 comment:

Marie-Claude BOITEUX said...

Good evening,
I am Marie-Claude Boiteux, Chair and Co-Founder of the support group “Cutis Laxa Internationale”. Cutis Laxa, as you may know, is a rare genetic disorder of the
connective tissue in which the main symptom is cutaneous. The skin is loose,hanging. It can be misdiagnosed with PseudoXanthome Elasticum or Ehlers-Danlos Syndrome.
As of today we have identified 114 sufferers worldwide. A research project has started in France in 2002 : Clinic and genetic study . Its coordinator is Dr Martine Devillers : mdevillers@afm.genethon.fr
If your sister wishes it, thank you for forwarding her my address. I would be happy to help and answer any and all questions she may wish to ask me.

Please contact me to the email address below if you need more information.

Marie-Claude Boiteux
« Cutis Laxa Internationale »
35, route des Chaignes
17740 Sainte Marie de Ré
France
Tel : 33 (0)5 46 55 00 59
e-mail : mcjlboiteux@aol.com
website : www.orpha.net/nestasso/cutislax

Cutis Laxa is a rare genetic disorder of the connective tissue. Our Support Group was set up on 11th November 2001, to break the sufferers’ isolation and loneliness and to support research.