My grandaughter could use some help.

[tcrist]

I am a very private person and I do not normally bring things like this up, but my youngest granddaughter could use the help.
Bristol is 15 months old and has been diagnosed with CDKL5. This is a disease similar to RETT’S syndrome. There are less than 300 documented cases world-wide. Funding for this disease is limited. Bristol will probably never be what you would call “normal”.

If anyone knows of anybody with this type of disease, you know what Bristol is going through. Any help would be appreciated.

I am attaching a link to the CDKL5 fundraiser page in Bristol’s name and also a link to an informational web site. If you know anyone that would like to help, all donations go to CDKL5 research and not to any one person.

If you do not want to donate, that would be ok also. Just a thought once in a while would be great.

Bristol Crist's Fundraising Page
International Foundation for CDKL5 Research

Moderators, if this is improper in any way please delete this post or move it to a proper location.

Thanks in advance, Terry

[392cobra]

Glad to help Terry. She's a real cutie.

[tcrist]

Thank ya much Fred. Appreciate the help.

[392cobra]

Terry,
I had hoped there would be some help on here for your granddaughter.

[tcrist]

Fred,

Sorry that it took me so long to get back to this post. I have had a few health issues and other things that came up.

As for Bristol, she is doing real good. She still has some siezures but no where near as many as she had before. The meds that she is on now are helping her a lot more than some of the others that she has been on. She is stiiing up by herself and feeding herself handfood. Unfourtunatly (sp) she will have to deal with this for the rest of her life. Bristol now has a little sister Jamie. Thankfully, Jamie has none of the issues that Bristol has.

The foundation is having some good progress. They have been able to replicate CDKL5 in mice so now they can work more on treatment.

Again thank you for your help and thoughts.

Terry

[392cobra]

Terry,
I'm glad to be able to help a little.

Real nice to see she has improved ! Hope the Foundation has continued success towards finding a treatment Bristol.

Happy Thanksgiving to you and your whole family.

[tcrist]

Happy turkey day to you and yours also Fred.

Thank you again for the donation and thoughts.

[tcrist]

Thanks to others that have donated also. I will not mention your names, in case you want to stay anonymous.

[tcrist]

My youngest son asked me to thank all that have donated and also to those who have had and kept Bristol and CDKL5 in their thoughts. He and his wife (along with myself) appreciate it very much.