First box delivery of the year
Last week Tyler made a very special box delivery to an amazing young man also called Tyler, this is the first box that he has been able to do post surgery and when he knew the young mans name he just had to go along. The box had been put together with lots of love by Tyler's gran and granddad who also help out with the Trust and it was their first delivery as well. They all had a lovely afternoon and thought that Tyler was such a brave and inspirational young man and that his family was so brave and supportive. It brought it home to me just how amazing our Tyler is , to have started something so special as the Trust and to have kept it together for 3 years despite the most awful diagnosis himself really does bring tears to my eyes.
We couldn't have done this however without our amazing team of Trustees: Michelle Dodd,Eileen Gibbs,Wendy Hudson, Trudi Lucas,Leanner Farr,Carla Hornby,Susan Hollingdale,Susan Toms,Craig Ellis and Jenny Love (and me of course). We also have 2 new invaluable supporters who I hope will join us on a permanent basis Karen and Bonnie(pet therapy dog) Sonia and Cassie. We really couldn't have done it without them, the same goes for our fantastic patrons Fearne Cotton, Nick Herbert MP and Paul Jones. They are all now good friends and have saved my sanity at times . There have been so many other people as well that have helped and supported us in so many different ways I cant possibly name them all but thank them from the bottom of our hearts, they include my lovely Sis,Karen who helps with bids,my aunt who does leaflets ,Ben Tyler' twin brother who is always there quietly in the background and so many others. What Tyler has achieved with this amazing team is incredible and so many local people have helped him on a personal level from the Kevin the barber making sure that he gets his green hair to Mandy the optician making sure that he has glasses to match.
When I am feeling a bit down with everything I just have to remember some of the acts of kindness that we have been shown. We are always looking for new people who can help out with our invaluable work, this could be as much or as little as you are able to give. We have volunteering openings in anything from Admin,helping at events,promoting our work, assisting at our free family fun day for our families. Please do get in touch if you can help out even if its only for an hour a month. We have our AGM on Tuesday 2nd May in Bognor if you would like to find out more .
So where are we on a personal level, well with wheelchair which I thought was now being asse'd at Donald Wilson House, this apparently that is not the case. We received a letter on Saturday, and you all know my hate of Saturday post !! Advising that we have to have the house assessed again but the apt is over a month away. This is so frustrating as there is likely to be a waiting list after this , I hope that after Thursday we will know what chair Tyler needs and we had been hoping to discuss possibly getting him to college for and hour or so a week. Without a chair this may be impossible, it was actually this process with the chair that made me start my blog, I will try to get the apt brought forward so fingers crossed. But some good news the arm chair has finally been approved, this will make such a difference to Tyler as we may finally be able to get the bed out of the lounge. To be able to sit in a chair to eat meals will be such a boost for him. On not such a good note we are still waiting to hear from the hospice, this is such a shame as if Tyler could get in a pool at the moment he would come on leaps and bounds. I am going to try and focus on the positive whilst highlighting the issues that we face. To this end I am working on a paper to highlight the issues around transmission and how we can work with local hospitals to improve the situation we and others find themselves in . I already have in place a meeting with the CEO of Chichster,Worthing and Brighton hospitals and the CEO of Southampton has expressed an interest in reading the paper. The purpose of this blog is not just to have a moan but to highlight issues and work with people to maybe find some solutions. I am passionate that we don't simply focus on ourselves but share our experiences to improve processes for every family in our position. No family should have a seriously ill child/young person and have to fight in the way that we have to simply get basic items. I appreciate that most staff in the NHS work their socks off and this is about working with them and understanding the issues that they face. On a local level Tyler's Trust wants to help with maybe decorating a teenage area and we are going to look at short and long term aims to support the hospitals that we cover.
As some of you know we met with a team from DIY SOS, we came very close but weren't lucky enough to be selected, another very deserving local family has been chosen nd I wish them all the joy that will come from this. For us it means that we will have to fund raise at some point to get the house adapted for Tyler to have a downstairs living area so if anyone has any ideas please do let me know. We will get a grant I believe but it wont be anywhere near enough, I also don't think that we can remortgage as I have had t give up work to support Tyler. At present the council is looking at initial thoughts on how the layout of the downstairs area could be adapted to best support Tyler. Any ideas please do let me know, my lovely friend Lisa is really helping with this and you could share your thoughts with her as well.
One simple way that could really help us is to promote this blog, please could you email it to everyone in your address book/face book page and ask them to do the same . We really need to highlight the very real issues that local people are facing please help if you can. If you would like any further information just drop me an email at Janice.ellis2@btitnternet.com.
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