Please join us in the Fight for PCH warriors! We will be hosting an online fitness event with Beachbody coach Chris Downing!
PCH stands for Pontocerebellar Hypoplasia . There are several types of PCH and different levels for all the children effected. Children can range from breathing on their own to needing assistance, eating on their own or requiring a G-tube, walking or unable to walk, sit or unable to sit. No child has the same experience or outcome with PCH.
Unfortunately most cases of PCH are degenerative; the disease causes the cerebellum and Pons to decrease in size. Unfortunately we are unable to predict what our children's future will look like or how long our children will be with us. The degenerative process can be extremely slow or rapid. But there also cases where the condition is not degenerative.
What makes me so passionate about raising awareness for PCH? When my son Major was 6 months old we received his diagnosis for PCH type Unknown. Because the condition is so rare the Doctors weren't able to give us a lot of information. What we do know is they do not believe he has the degenerative type. With his weekly PT, OT and feeding therapy we have watched him grow stronger by the minute. He has taught me to not dwell on the things we do not have but to celebrate what we do have. To thank God every day for the progress and achievements he has made. To live life to its fullest and NEVER give up!
My son's diagnosis has introduced me to an amazing community! The PCH family! We care about eachother and love seeing updates of our warriors. We grieve with the families when we have lost a child to this disease. We support each other when we have no where else to turn to. I am forever grateful for being apart of this family.
Our goal is to help raise awareness for PCH to help find a way to stop the degenerative process! PCH Warriors fight so hard!! We want to show them that they are not in this fight alone!! Together we can make a difference! Alone we are rare, together we are strong!!
The event will be hosted via Zoom! In order to get the Zoom ID and password you must Donate $1 or more. Whatever you are able to donate is greatly appreciated!! Once you donate I will email you the zoom information. If you are unable to attend the event, please consider still donating. But we also want as many participants as possible to show our PCH Warriors some love and support!!
The event will be on June 27th 2020 at 10:00am Eastern Time. It will be for approximately 45mins But the workout itself will last 30mins.