Hi there, Im Mel.

Mummy to Zakk who is surrently 11months old. He was born at 32 weeks after PROM and infection, he was first diagnosed with cystic pvl (brain damage of the white matter) however at 5months old with diagnosed with spastic cp in all four limbs. He also has Epilepsy and issues with feeding. Would love to speak to anyone in England to share our experiences and to gain comfort in knowing others are going through the same issues as we are.

Thanks

Hi
I live in SW England. I my son is nearly 3 and has spastic diaplegia. He has PVL with cysts, but we're not sure about it as the consultant was a bit rubbish in explaining to us what that really meant.
We've had good and bad experinces with the NHS. Mostly now we are in the community we are happy. A few problems with the OT and the wheelchair services, which has been sold off! But getting there and getting easier day by day.
What do you think is your biggest obsticle at the moment? We're a little further down the road and might be able to help? Who do you have involved? Tell me a little more and we can exchange experiences.