Inna is 9 years old and lives in France with her family.
Her mother, Elsa Delhelle Gasnier, says that since Inna was diagnosed with Rett syndrome, their family schedule got filled with never ending medical appointments, which many times feel like a stressfull battlefield:
“Appointments, appointments, always appointments… Good news and bad news…
When we have important appointments, we always have ambivalent feelings because we fear to get bad results or news…
But last time, Inna was relieved, we were relieved. The back X-ray (with and without corset) showed a small straight back! And that’s a big VICTORY. After 1 year and three months of corset her little back is well aligned. The doctor specializing in functional rehabilitation also checked all her limbs and joints. No stiffness, rigidity or deformation. Another BIG VICTORY.
All her efforts paid off, she was so proud of herself and it was so beautiful to see.”
Does that sound familiar to you as well?
Many families all across Europe struggle in a similar way. Sometimes winning the battles over Rett, like Inna, yet sometimes losing them and having to accept new challenges and cope with the consecutive emotions. Therefore, we strongly believe that profesional psycological support for Rett families should be provided throughout their life to help cope with this excessive stress.