My husband and I are making plans to attend the conference next month, 7/17-7/19. This will be our first trip to Dekalb for the conference, as our son was only recently diagnosed with Alexander's Disease. Any other parent's of young ones here planning to attend? Or any of those living with Alexander's?
Hi there Applepie,
it would be so awesome to be able to go, but it's just not possible for me right now. I would have loved to meet you and your husband in person! My husband and I did go to DeKalb in 1994 shortly after Dan was diagnosed with Alexanders. We were living in South Africa then, and got sponsored by Virgin Airlines. It was a terrific week, very helpful and very hopeful too. If you can, do try connect with Dr.Marjo van der Knaap from Amsterdam, Holland. She diagnosed Dan, even before the genetic marker was found for Alexanders, and confirmed in his blood. She is wise and has a massive amount of experience and knowledge. I hope it is a week where you can know "you are not alone".
take care,
Skipsquirrel
Hi, there yourself. Thanks for writing back. I actually work for a group of doctors (pathologists) who found out about the conference and told me they are sponsoring our trip so that we can go to the conference. They've been helpful with questions I've had, and the neuropathologist in the group is very involved in the leukodystrophy network of physicians and told me about Dr. Marjo van der knaap as well, but only about work he's done with her. It still doesn't amount to the knowledge and support I'm hoping to find at the conference next month. I was almost 12 weeks pregnant when my son, Parker, was diagnosed with Alexanders. Tomorrow will be 16 weeks and we have an amniocentesis scheduled and are keeping our fingers crossed that Parker will be the only little angel in our family to have to fight this terrible disease. How old was Dan when he was diagnosed? Parker was only 13 months and has struggled developmentally since about 6-7 months of ago. His diagnosis was only just confirmed from the gene mutation on Friday afternoon. I'd be very interested in finding out more about families like yours that have been working to overcome the struggles involved here and learned what works and what doesn't, things like that. If you have any insight you would like to share, I would really love it!
Thanks a lot,
applepie1281 (Jen)
Hi Jen!
My 3 year old son, Christopher was diagnosed with Alexander's disease at 5 months. At his best, he was crawling everywhere, including up the stairs. Sadly he has lost all his skills and is fully dependent on us for everything. He still has the most beautiful smile you'll ever see. In February, I gave birth to another beautiful baby boy. We also did the amnio and thankfully it was negative for Alexander's. We opted not to re-test after his birth, although I haven't ruled it out completely. He already has hit more milestones than Christopher did at the same age. It doesnt mean that I don't freak out about little things...
We are not attending the conference because I don't want to leave my kids behind, we will be going to Hunter's Hope symposium instead. We did attend the AxD conference in April. That was really nice meeting other parents and kids affected and we left feeling more informed about what we are dealing with. I'll keep Parker in my prayers and also praying for good results on the amnio.
With hope and prayers,
Aide'
Hi! I'll be there with two other moms of children with Zellweger Spectrum Disorders. I am flying in Friday morning. I look forward to seeing you there!
Shannon Butalla
Lincoln, NE
mom of Sam
born 7.1.2002
My husband and I will be there. Our three year old has Vanishing White Matter disease. We're excited about the prospect of meeting other parents with a child like ours. It's so difficult for the people in our lives to understand what we deal with on a daily basis.
See you there!
My husband and I will also be there. Our three year daughter has Vanishing White Matter disease. I would love to meet up with you.
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