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Hi Anja,

Thanks for the post and update sorry to hear about Marcel's diagnosis I have a friend who has a son CJ with Mitochondrial Disease too, it's a challenge every day so my prayers are with you all. Keep us posted.

Irene in Florida

Re: Check in Day

Hi All, its been some time since I last posted. Fabien & Marcel are now 3 1/2 years old. Fabien is doing great in all areas except speech. He is making lots of noises and blabbers a lot but there no real words yet. He does sign quite a bit but if you do not immediately react he screams and yells. Marcel is a different story. Its been a little over a year now since his episode last year and it looks like we may finally have a diagnosis for him. Mitochondrial Disease on top of Down Syndrome is just not fair. He is stable but its a progressive disease so we just enjoy every single day with him as we do not know how much time he has. His wheelchair is very nice and it helps him interact a little better with peers and his brother. His cortical vision impairment will not change. He can only see shadows and differenciate between light and dark. The discussion around sleep was very interesting. Marcel is on the liquid Melatonin and it works perfectly. The tablets did not work at all for him. We declided to give him Clonadine. There is just too much risk to give a bloodpressure medication. We have more problems with Fabien now. He is constantly getting out of his bed and it takes about 7 to 8 returns trips every evening until he finally stays in there. We even got blackout shades for the room. Unfortunately they do not help in the morning. I would really like to sleep longer than 6am on weekends.... I am attaching a few pictures. Hope everyone is doing fine and enjoying the summer. BTW - went to Disney last month and with the disabled pass it was great. No lines and lots of rides were Marcel could get in with his wheelchair. Cheers, Anja