A few words from Matei’s parents :
Our beautiful, bright boy Matei has been diagnosed with a rare genetic muscle disorder - congenital myopathy - Central Core Disease - RYR1.
This condition does not affect intelligence but affects muscle development, especially in the lower body. This condition only affects about 1 in 90,000 special kids around the world.
Central Core Disease is a rare muscle disorder caused by a mutation in RYR1 gene. This means Matei has hypotonia - decreased muscle tone and muscle weakness.
There is currently NO CURE for RYR1. The only treatment available is physical therapy ( TheraSuit Therapy, KinetoTherapy, Massage and Stretching, Cuevas Medek Therapy, PhysioTherapy, HydroTherapy, etc).
Matei is unable to walk at the moment due to his condition and is behind with his mobility milestones compared to kids his age, we are hoping with your donations we can reach our goal - TO WALK.
These years are so crucial for our journey. We are seeing good progress after each session of therapy. It is important to make all the progress we can at this age while the body is growing and responding to the treatment.
We are raising funds for:
The chances of Matei walking are high if he can have as many therapy sessions as possible. The money we raise will go towards all Matei’s specialist therapy sessions and any special mobility equipment he needs to feel independent. These therapy sessions are not available in many places, so we must travel to attend them. Matei is also joining Nursey in September and will require special equipment to be able to interact in the class with other kids.
We never thought we would be in this position and are normally the ones donating to these kinds of pages, not the ones setting them up. We know times are hard at the moment and understand if you are unable to donate, but if you can, share Matei’s story as far and as wide as you can on every platform to help us have the best chance of achieving our goal.
Let's ALL give Matei the best chance to reach his goal –TO WALK
You can follow Matei’s journey here:
Instagram name : matei_fight_ryr1