A lovely day but upsetting news as well

Disappointing and Frustrating News

I haven't been able to write for a few days as I was so upset. We had just come back from Tyler's last hospital appointment when I received a letter from the Children's hospice to say that Tyler didn't meet their criteria. The very next letter that I opened was a plea from Tyler's consultant oncologist to the hospice asking them to admit Tyler, his letter clearly showed that he met their criteria. I can only assume that they hadn't read this prior to making their decision, I have therefore asked them to read the advice and review their decision. This doesn't really help Tyler in the interim as he needs the support now, I have also asked that they use common sense and support a young man that does so much for others and lives just up the road for them. Otherwise we are going to have to try and find somewhere locally that might let him use their pool etc.

It would also appear that we are likely to have to fund his wheelchair ourselves due to NHS restrictions and timescales. This is likely to cost in the region of Up to £2000, this may not sound a great deal but I have not been able to work for 2 years. In addition to this although we will qualify for a council grant there will be a likely shortfall of up to £20000 - £25000. This is an amount that we are unable to raise, therefore we are going to have to do something that we have never done in all the time that Tyler has been ill and ask for help. We would love to hear from anyone who has any ideas as to how we can fund raise or that can support us . To assist with this we will be setting up a BT donate page with a separate bank account, any funds not used by us will be donated to Tyler's Trust. This has been really hard for us to reach this decision but we have to do what we can to ensure that Tyler has everything that he needs.

We had a really lovely day today and Tyler was thrilled to have been invited to a very special young mans first birthday - Harvey. His lovely parents Sophie and Lee have supported us in so many ways along our journey and become good friends in the meantime. It is peoples kindness that helps us keep going . To finish off a lovely day I treated myself to a game of Bingo with my best friend Michelle who has saved my sanity on more than one occasion!!! It has also been absolutely great having some off our family visiting from up north this week.

Please do get in touch at Janice.ellis2@btitnernet.com with any comments or suggestionsxxx