Last week we tried Freddie out on a bike. It’s a specialist trike designed especially for children who have additional needs and require extra support. We tried him on one a few years ago when he was 2 but decided to not purchase one and to wait until Freddie was slightly older. So Freddie was measured and the bike was set up to give Freddie enough support so he was comfortable but also they made sure he didn’t have too much support so his muscle would be working as he rode. Freddie loved it! We loved it. We were excited by the prospect of our son finally getting his first bike. But then the quote came through for it, and this is where things get so frustrating. The quote is £2440. Now we knew it would be expensive, we’ve lived in the disabled world for long enough to know an extra 0 gets added on to the end of every product.
We were hoping to get the trike for Freddie’s birthday, but with 6 weeks to go until he turns 6!! this is looking unlikely. It’s not as simple as it is to buy for Freddie as it is our other children. Freddie sister Evie recently turned 7. Now she was easy to buy for she knew exactly what she wanted and other than hitting my bank balance by a few hundred pounds it was easy. With Freddie we can’t just do this. We can’t go to the toy shop & buy Freddie’s bike. We can’t do anything for Freddie anymore without the help of others.
Freddie is in desperate need of a new carseat. Unfortunately standard car seats aren’t suitable. So in order for us to equipped Freddie out with the right kind of car seat we have to have him assessed, which takes time to sort. Then find the £2000 required to pay for it. Now i’m not in a financial position to pay out for things like this. So we have to approach different charities to ask for help. And this is time consuming. It can take months to sort by the time you have provided the evidence they require to prove your child is disabled, then you have to prove financially your not able to contribute towards the costs then lastly you have to have a supporting letter from a medical professional to agree that this product is required and suitable for Freddie.
Freddie has also outgrown his current pushchair. We are in the middle of trying to sort a new one. But again this ends up massively out of our control. We have to be referred to wheelchair services who then assess Freddie and advise what they think is suitable. Now we massively appreciate the NHS, they have done ALOT for us, but they just don’t have the budgets needed to offer the equipment that children need. We are possibly looking at ending up in a situation where they can’t offer Freddie the right kind of wheelchair he requires, deserves and needs so we may end up having to go down the self funding route again. Which will mean approaching more charities to help us pay to get our son out of the house.
The next item is Freddie’s indoor chair. Again he has outgrown this and the wheels on the base of the chair are not suitable. We are told a new chair has been ordered but weeks later we are waiting on it to be delivered. Which isn’t a huge deal but it adds to the frustration that you can’t cater yourself for your own child’s needs. You can’t just go out shopping to buy him a chair like we do for our other children. We are always relying on other people to help us.
Realistically we are looking at over £10k to provide Freddie with the equipment he needs. Likelihood is he may not get his bike for his birthday. We have to fund the equipment he needs first and the carseat is our main focus right now. It’s incredibly hard to watch your child go though so much and then not be able to provide them with things to help make there life’s more fulfilling. In the past 6 weeks alone he’s had 2 operations and 2 chest infections. Now it’s time to see him smile, and he didn’t half smile on his bike.
I’m aware this post isn’t the happiest! It’s just reality for us right now. But i’ll leave you with a few photos of Freddie on his bike to cheer the post up 🙂