I have always thought that if you have enough money to pay your bills, have the odd night out and an annual holiday that should be enough. Due to the position that we find ourselves in I am having to change that point of view.
Tyler had a lovely day at a friends birthday last weekend but was quite quiet afterwards, this was due to the fact that he found it hard as in his words he was "stumbling around". Everyone loves Tyler he is one of those special people that you cant help but be inspired by , but like all of us he has days where he finds it hard. As a mother it is so hard watching this amazing young man help others so much and not being able to give him what he needs. There are so many things that could help him at the moment which are either not available on the NHS or have immense waiting lists.
If we could get him into a swimming pool it would be amazing , I am going to try a few local venues and see if they can help. The area does need to be relatively private, Avidsford Hilton has a lovely little pool but membership is £100 per person per month if we could get him in there it would help so much, will also try the place at Fontwell. If anyone has any ideas where we might be able to get him some quiet pool time please do let me know. I will then be able to liaise with his physio and get him to come along to the first session for safety purposes. Following the last op Tyler is virtually completely numb on the whole left hand side of his body and being in water would just help so much.
So today we have been up to have a wheelchair assessment with a lovely man at Donald Wilson House. He has come up with the perfect thing for Tyler and this is something that we cant get on the NHS or at least not for a year. A chair was recommended that Tyler could use at home,college, and anywhere that he needed to go . It was so wonderful to see him whizzing distances around St Richards that he just hasn't been able to do ,he looked so happy and independent. The chair does cost more than we thought due to the specialist bits that he needs , so for this alone we need to raise £5000. The chair can be built in 3 weeks we just need to come up with the cash, a friend mentioned crowd fund raising but I am not sure how we do this, Craig is looking into it. I am loathe to do this but I am going to ask if you read this blog perhaps you could donate a £1 towards this life changing wheelchair.
Chesnut Tree has acknowledged my complaint but it is not looking likely that they will help us. I find it so hard when I see posters everywhere asking people to fundraiser for them, I just wish that they coud help a young man so close to them and whose whole life they could change. Anyway so what does Tyler need:
He needs his electric wheelchair (yesterday !!!!!)
Therapy IE swimming/massage/ - to get him as mobile as possible
House Adaptions - to allow him to bath without having to need his mum to help him.
Holiday , what I so wish that we could concentrate our finances on is a holiday for Tyler so that he can rest and recuperate. Unfortunately due to the above that is so difficult.
Whilst all of this is ongoing Tyler was asked if he would consider becoming a young persons ambassador for the Brain Tumour Charity. Of course he jumped at the chance as he feels that it is so important to make everyone aware of the symptoms of a brain tumour. So whilst all of this is ongoing he is going on an induction course for them as he just wants to help those who are suffering.
As a mum I am so proud of him and just wish that I could get him what he so desperately needs. He deserves so much but short of a lottery win I fail to see how I can get it for him. I am sure that any other parent understands how useless this makes you feel.
If you can help please do get in touch, perhaps you could hold a sponsored event or even simply pop £1 in the post . Once we have 3/4 of the wheel chair omeny they will start to build it but need the full amount for delivery.
You can contust us at Janice.ellis2@btinternet.com or donations can be sent to 74 Orchard Way Barnham PO22 0HY. I find it very hard to post this and can only hope that any parents who read this understand xxx
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