The Doctors are not sure what to call what Ben has. This is how his Mom Amanda explains it.
"He has microcephaly (small head), he is strictly g-tube fed, low muscle tone, cognitively he is at about 6-9 months old. He also has seizures and shallow breathing episodes because of the calcification in and on his brain and brain stem.
his seizures last anywhere from a few seconds up to 4 hours each. He will have "seizure days" on average about once a week but can be seizure free for up to a month. well, that's what we are thinking. His seizures often go unnoticed because there is no sound and often very little movement. When he has his "seizure days", he will have anywhere from 5-20 seizures on that day, each one lasting 5 seconds up to 4 hours plus. With the seizures he tends to have very shallow breathing and will usually vomit. And its very important to time the seizures and to have his rescue medication ready if needed.
With his shallow breathing episodes he will have very shallow breathing to where his o2 levels will drop into the 70s or 80s. These can also last anywhere from 30 seconds up to 4 hours plus.
We have some scientist out in London England doing research to find out what syndrome Ben has."
Byron and Amanda Dueck say they've collected enough money to buy the "Seizure Service Dog" ($15,000 USD) but need to go for 2 weeks of training with the dog in the States. That's what they're raising money for now. Here's how we can help.
PAWS 4 BEN FUNDRAISER
7PM-12AM(doors open at 6:30)
BAND....COUNTRY SINGER JERRY SEREDA
SILENT AUCTION,LIVE AUCTION
FOOD and FUN
FOR TICKETS call Annette at 204-381-1800 or Amanda at 204-381-4541