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Family fund saved my sanity

Family fund saved my sanity

First of all, I’ll give a quick introduction of my son and his daily needs - Aj will be 3 years old in October, and as a result of a brain injury he has four limbed cerebral palsy, severe autism, global development delays and feeding/aspiration problems. He relies on me throughout the day for all his needs (feeding, medications, toileting, dressing, Physio and chest Physio etc..). He can’t entertain himself, as he doesn’t play with toys, so I’m always trying to find something to help settle his frustrations. He’s also a hardcore sensory seeker and needs constant supervision because of this! He has meltdowns throughout the day, these can sometimes last all day, he scratches at faces and legs and bites himself. He needs to be picked up a lot when he falls over and he loves to be swung and spun around (which takes it toll on my back!!) Days with Aj are pretty much non stop. And this is why I absolutely LOVE family fund.. We recently applied for a grant for a family holiday. We sent off the application in May and not long after, we received a letter saying we had been awarded a grant to go toward a haven holiday! (YAY!) Immediately after opening the letter I was excitedly checking online, searching for Haven sites, checking dates (what fit in with both mine and my partner’s schedules!) and looking at their facilities. We managed to book a fully adapted caravan in Wales! It had a wet room, wide door frames and a ramp outside!

Family Fund Holiday - Haven

Family Fund Holiday - Haven

Something as simple as a week away with the family may not seem like much to some, but for us it was literally a life saver. It gave us chance to have fun, fun without worrying about what appointment was next. We went swimming on the site daily (my son LOVES the water, he feels so free whilst he’s in there!)

Aj on the beach with his mum

Aj on the beach with his mum

We visited beaches, took him to the arcade twice a day to play on his favourite ride and we had days out, he even got to ride a pony! (With lots of help from his daddy!)

Aj Horseriding

Aj Horseriding

All these things we wouldn’t of been able to afford to do if it wasn’t for the help from family fund. Being so busy doing ‘normal’ family things took my mind off worrying about my son’s upcoming operation for a gastronomy insertion, which I’ve been driving myself crazy over! We smiled, we laughed and we felt a little bit more ‘normal’ during that week away. So, thank you Family Fund. You are incredible.

Aj enjoying his holiday

Aj enjoying his holiday

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emmy Heaton

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Hi I'm Emmy, mum to AJ who has cerebral palsy.

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