NHS Needs to join up its services to support our most vunerable young people and become more cost : WHAT A WEEK!!! NOW LET THE HARD WORK COMMENCE!!!

NHS Needs to join up its services to support our most vunerable young people and become more cost : WHAT A WEEK!!! NOW LET THE HARD WORK COMMENCE!!!: What a wonderful amazing week. I have just had to start this post off with a few more pictures t...

WHAT A WEEK!!! NOW LET THE HARD WORK COMMENCE!!!

What a wonderful amazing week.

I have just had to start this post off with a few more pictures than normal and that is thanks to Amelia May taking such wonderful photos that I have been spoilt for choice. But let me explain how this came about , an amazing charity called Steph's wishes arranged a wish for Tyler.

He could have asked for anything but Tyler being Tyler family as ever came first, as many of you know much of our family is based in the North East. The last time that we did this journey by car it took 10 hours and we realised that we weren't going to be able to make a journey taking this long again for a while. 

One of the the Oncology team at Southampton who knows Tyler very well put him forward for a wish and when he was well enough Stephs wishes got in touch. When they realised that it was seeing his family that was most important to him they got straight into action. They arranged the most perfect week starting with a taxi from home to Southampton Airport, help through security etc and a private lounge to await our flight in . After a swift flight we were in Newcastle where we were collected by my brother in law and within the hour we were sat down having a cup of coffee with the rest of our family. It was amazing to be door to door in such a short time.

Not only did Steph's wishes organise our transport but they treated us to a meal for the whole family at the wonderful Seaham Hall, what a treat. The icing on the cake was that they had organised for Amelia to come along and take some photo's , as anyone in our position can tell you the more photos that you have the better. She took photos that we never would have thought of, and I didn't think that it was possible but I am actually laughing a proper genuine laugh. I cant remember the last time that this happened, you smile as and when it is expected of you but a genuine laugh or smile that reaches your eyes can be very rare. So a huge thank you to these amazing people who went out of their way to help us laugh.

For the rest of the week we simply enjoyed time as a family, including BBQ's(thank you Andy who cooked on fathers day !), meals out , and relaxing in the garden. We even fitted in a trip to my niece and nephews school as they wanted to support Tyler's Trust and hear all about Tyler's work - thank you Rose for nominating us. It was lovely to actually be there when Rose heard that she was through to play for sunder land Ladies under 10 and that James had his next grading. These are things that although you get told about it is very special to actually be there and see their excited faces.

We were further touched by the kindness of local people, Tyler wanted to check out the new cinema and this isn't always as straightforward as it sounds when you need to take a wheelchair. I emailed Cine world to check out the disabled access and they were fantastic, they arranged an access booth which is just for 2. In addition to this they treated us to the tickets and the manageress met us at the door and brought up coke and popcorn. This was so amazingly kind I could have cried, it is only the 2nd time that Tyler has been to the pictures in 2 years as it can be so difficult. It was a really good film as well, Tom Cruise is not really my thing but I thoroughly enjoyed the Mummy. We were even given the tickets in an envelope for our memory box.

It brings home to you that normal things can be achieved but sometimes you need a little bit of help and that the smallest of kindnesses can be remembered for ever. 

I don't think that I head realised just how stressed and tired I had been feeling until we could simply switch off for a week. Thank you to everyone who helped make this week amazing.

So now it is back to reality and the next stage of things that we need to sort out, here goes what's coming up next. The big thing that we have to do is raise £30,000 to get the house adapted, I apologise to those of you who sent thrilled messages to say well done you have done it . We set up the original crowd fundraiser for Tyler's chair/house adaptions, we didn't realise that we couldn't extend the end date. As many of you know Tyler now has his chair following huge support from Micky, at the Queensway mobility Centre, the Railway Club Bognor and the Windmill Café Barnham, not to mention numerous individuals who have donated anything between a £1 and £500. Each donation is precious because it shows that people care and support us. So as it stands we still need to raise £30,000 for the house adaptions/wet room, from the crowd fundraiser there is already just over £4000 in the account towards this figure. But as the crowd fund raiser end date couldn't be extended we have had to relaunch it - I hope that makes sense.

This figure sounds huge, but there are some exciting things happening which may help , I hope to share more about these very soon.  If each one of our family and friends could pledge £1 it would be such a help. The way that it works is a little frustrating, although we qualify for a council grant we have to have our funds in place first.

The council will not even instruct the Surveyor until we have money/pledges of at least £20,000 . They will accept a written pledge so that money does not have to leave a charity/individuals bank account until the council deem it necessary.

If you can think of any charities/firms or individuals who might be able to help please do let me know.

I must finish with another thank you though to each and every person who has supported us , if you would like any further information please do feel free to get in touch : Janice.ellis2@btinternet.com

Sorry for such a long update I hope that I haven't bored you too much, more soon .

Janxx

NHS Needs to join up its services to support our most vunerable young people and become more cost : NHS Needs to join up its services to support our m...

NHS Needs to join up its services to support our most vunerable young people and become more cost : NHS Needs to join up its services to support our m...: NHS Needs to join up its services to support our most vunerable young people and become more cost : Is there a straw that breaks the camels...

Please help an amazing young man

NHS Needs to join up its services to support our most vunerable young people and become more cost : NHS Needs to join up its services to support our m...: NHS Needs to join up its services to support our most vunerable young people and become more cost : Is there a straw that breaks the camels...

HELP NEEDED PLEASE

FINALLY AT THE TOP OF THE COUNCIL LIST FOR THE HOUSE ADAPTIONS!!!!

I was so excited to get a call to say that we are now at the top of the council list and that someone would be out to complete the application form. It was a bit of a mixed blessing, although this is absolutely the best thing to happen for Tyler we have to raise a lot of money.
They explained that although we qualify for a full grant we would need to raise appx £30,000 on top of this !!! They wont order the work to start until we have raised at least £20,000, so I spent last night thinking how on earth do we do this quickly , any ideas?
We have some money left from the wheelchair but this is not even a quarter of what we need, we cant remortgage as I am no longer able to work. So fundraising ,grant applications and donations are the way to go.

We have already had some friends/colleagues come forward to say that they will fund raise for us which is fantastic. The council are happy if people are able to pledge money that they put this in writing but that the funds wont be needed until the build starts .
This is literally going to be life changing for Tyler if you have any ideas please please do let me know. We hope to get Tyler back into St Phillip Howard and with the adaptions and the electric wheelchair we will be able to independently get himself there.

It finally feels so close to getting him what he needs but so far at the same time. To many £30,000 is not a huge amount of money but at the moment it feels like a mountain to climb. Please help us give this amazing young man a shot at a the independent for filling life he so deserves.

Please can you share this plee with anyone who may be able to help and forward it far and wide .
You can reach us at Janice.ellis2@btinternet.com