Aleksandra Certa Anya's got a condition where her joints dislocate easily. At the same time her muscles - especially lower limbs, are too weak to keep them in place. She'll need a surgery around her hips later on this year but for now we need focus on making her lower limbs stronger.

Anya has got a recent diagnosis - she's got a very rare genetic syndrome called Kyphoscoliotic Ehlers-Danlos caused by mutations in gene FKBP14. It's so rare that there are more chances of winning a loterry - there is only 24 people with it in the world.
All people had different symptoms but common one was progressive kyphoscoliosis in childhood and joint dislocations throughout life.
She needs ongoing help with physiotherapy where we work on gross motor skills development, ongoing speech therapy and language development.

Braniwave has been great for Anya and our family. We've attended 2-day assessment and 2 re-assesments so far. Each time we see Anya improving with programme we've been given.

We are hoping to raise money for guardianship where treatment and any equipment from Brainwave will be provided for us for a whole year. Aleksandra Certa