28/02/2026
Things I’ve experienced as the mother of a child with Charcot Marie Tooth Disease - a progressive neuromuscular condition that affects 1 in 2500 people:
✔️ Intense grief at diagnosis after testing, even though I knew in my heart it would come back positive.
✔️ Anguish at seeing him in physical pain, knowing I couldn’t take it away.
✔️ Pain at his distress at not being the same as his peers and not being able to keep up with them.
✔️ Frustration and anger with school for failing to understand what his limitations were.
✔️ Fear that he would die either from complications from his condition or during surgery.
✔️ Horror at being told he might not be able to walk after surgery.
✔️ Sorrow that my other children were affected too.
✔️ Helplessness at a number of factors far too many to list.
✔️ Resentment that life was so bloody hard for him and for us.
✔️ Trauma
✔️ Therapy to try and work through all of the above.
✔️ Pride at his strength, courage and resilience.
I’m going to stop there because, honestly, this is a really hard post for me to write.
What living through this has given me is a passion to help other parents going through it. The medical field can be amazing but it’s definitely lacking in empathic understanding at times.
If any of this resonated with you and you feel you’d benefit from some support, please contact us at:
[email protected]
Gemma 💕
