6 month old Holli received a cord blood transplant at Duke on October 7. She is now dealing with mucositis, an unpleasant side effect of pre-transplant chemotherapy. The parents have been told that the worst of it should be over in a week. Holli is receiving medication to keep her comfortable and is otherwise doing well. Before the transplant there was no brain stem damage and the doctors believe what damage was in other parts of her brain is reversible.

Holli's parents are Sherri and Kent. Holli has a 7 year old brother back in Oklahoma and an older sister that died from Krabbe's.

Holli's family is not on the internet, but if you send a message to Kelly at kellysue@mindspring.com, she will take it up to them.

Rob and Erin's only child, Anthoney, was born in March 1996. September 1996 he was diagnosed with infantile Krabbe's. Anthoney is now 3 1/2!

While they aren't new to Krabbe's disease, they are new to the internet. You can now write to Rob and Erin at:

FOSTERREA@aol.com

Chandler recovered from pneumonia he got at Labor Day and is doing well.

According to mom, the only things Chandler is not doing now that he did before transplant are smile and complete head control.

Victoria is 10 months post transplant and doing very well. She recently celebrated her second birthday where she ate a little birthday cake. Victoria's recent MRI showed no further brain damage. She smiles and laughs and is a joy to everyone around her.

Laura is back in the hospital in St. Louis recovering from GVH. She was transplanted in August at 3 weeks old. She is now smiling and trying to roll over. Her parents are seeing glimpses of her personality as she looks for them when they speak and smiles when they coo at her.

Marwa now has a g-tube and she is on medications that are controlling her seizures and allowing her and her parents to sleep at night. She seems to have leveled off and Rima and Mohamed are loving every minute they have with Marwa.

Rima no longer has access to e-mail. If you send a message to robmil@gte.net, it will be forwarded to Rima.

I (Joseph's mom, Michele, the pillow lady) want to apologize for allowing this site and the krabbe-disease.com site to sit unchanged for so long. I am currently 31 weeks into pregnancy that has brought new meaning to the concept of morning sickness -- It doesn't just happen in the morning and it doesn't necessarily end with the first trimester. The baby is fine and I know she is well worth anything I've had to endure. I just want everyone to know that I am committed to this and I plan to continue as I am able. In the future I will be working with Kelly (David's mom, Hunter's Hope Ambassador to Duke) and others to get updates on our kids out in a timely fashion.

Thank you for your patience.

If there is information you would like added to the bulletin board, please contact us at robmil@gte.net

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