Christopher Needs Your Help
As many of you know, Christopher, has a rare genetic disorder PMM2 CDG. This disorder affects nearly every part of his life. He has vision abnormalities, hearing loss, cerebellar atrophy, heart, liver and kidney abnormalities, central hypothyroidism, low muscle tone, a blood clotting disorder and he’s fed via GJ tube. He’s at risk for seizures, strokes, and stroke-like episodes. Nothing comes easy for him and in order for him to continue to amaze us with reaching milestones intensive therapy is a must!
Updates (6)
March 1, 2019
On February 8 Christopher had his first seizure. We knew he was at risk for seizures but I was really holding out hope that just maybe we'd escape them. As we were all winding down on the 8th Christoper was happily watching a show on the floor until all of a sudden I heard him making gurgling sounds and ran over to him. I picked him up and immediately told Ryan to call 911. He was lifeless, barely breathing and unresponsive. I laid him on his side and monitored his breathing until the paramedics arrived. After we arrived at the hospital he was returning to his baseline, thankfully! He had an EEG in the hospital but nothing was captured, which we expected. We had an appointment with a neurologist and she said to expect it to happen again. We have rescue medication and his metabolic specialist said he will need to be evaluated after his seizures regardless of if we think he's back to baseline or not. So now we prepare and hope they are few and far between!
January 5, 2019
We are gearing up to head back to California for another 3 week NAPA intensive! We have seen so many gains from his intensives. Although many may seem small to others they are huge for Christopher. His head control ihas improves, his stability while sitting, his ability to push up to sitting AND bring both legs in front of him. We are so proud of how hard he works and it can be extremely wearing at times and emotional we know that the intensives help him a ton! We have 5 hours a day scheduled, total of 75 hours. I am really looking forward to what he will accomplish on this next intensive!
Guestbook
April 11, 2019
You are loved and we continue to pray for you and your amazing family
Bradley/Colleen Wood
March 1, 2019
Christopher is awesome and so is his family!
Ed and Jean O'Connor
May 11, 2018
For Christopher Schlemmer!
Betsy Golden
