Monday 11 December 2017
NHS Needs to join up its services to support our most vunerable young people and become more cost : ******What an amazing few weeks,achievements,set b...
NHS Needs to join up its services to support our most vunerable young people and become more cost : ******What an amazing few weeks,achievements,set b...: I really dont know where to start! I have been trying to find a few minutes to write this blog for about 2 weeks.So much has happened but t...
******What an amazing few weeks,achievements,set backs, fun,stress, tears and laughter!******
I really dont know where to start! I have been trying to find a few minutes to write this blog for about 2 weeks.So much has happened but to start some photo's.
As I write this I have to admit to feeling really stressed. I don't feel that I am managing my time very well at all. I keep compiling to do lists and its just not working. My diary is over run with appointments , sometimes up to 3 a day and I am going backwards .
That sounds really bad and I don't mean to complain because I am sooo grateful for all the help that everyone has offered us and the support shown. I guess I feel guilty that I have to sometimes say no or cancel things. It is a really hard thing to do ,to say please can we cancel an appointment when someone is doing something amazing for you .
All I can say is that from the bottom of our hearts we really do appreciate everyone's support,care and commitment to us . It really is amazing , anyway enough of that , my final point on this is that self help books really don't help , they just cause clutter ! However I have found one book which is fantastic and I will share more of this later .
So whats been going on ?
Together For Tyler Update
So many events, so much fun and an huge increase in money towards our target.
Spirit FM Quiz
What a night ,the venue was packed, there was even a reserve list for tables . A huge thank you to India,Sally Stuart and everyone else who organised this . I think that we were all just hoping that we wouldn't be the ones to win the wooden spoons . This honour went to my lovely friend Chris .
I am not actually quite sure who won the head to head out of Spirit and The Observer, I think it could be the Observor , but occasionally it has been known for me to be wrong !
However the main thing is that everyone had an amazing night .
One of the raffle prizes was a trip to meet the panel of celebrity juice and see it filmed. There was a great deal of interest in this but one particular lady was determined that this prize should be hers .
I am thrilled to say that the lovely Sally from Spirit was the winning bidder and she will be joining us on this trip next year.
What overwhelmed me though was the people that had come out to support us old friends and new. It was lovely to see old work colleagues from the Job centre and people that have come to mean an awful lot to us over the last few years.
I was particularly thrilled to meet Rita Sen and her team as it was due to them and Father Chris, that I was able to make the amazing announcement that we had reached the £20,000 target needed to book the surveyor!!! I hope to catch up with them soon and see how we can make a proper thank you for this donation.
Always love having my best friend Michelle in the venue as well.
This night raised over £2000 which is simply incredible . It was also a great deal of fun, although I think Stuart and Simon struggled to speak on their show the next day !!!
I'm not sure if its because they attempted some singing as a sideline ?!
So that was Wed night with Thursday came the Quiz with a difference.
This was organised by the lovely Kerry,Susan and Julie with lots of help from their team, including fantastic music by the choir . For this quiz we were joined by Stuart ,Wayne and Simon Quiz master supremo!
It was quite probably due to this fact that we won by one point. Well that and the fact that we played our joke on the starwars round and bribes were accepted. Final figures to be confirmed from this but its in the region of £1500, what an achievemnt .
The following night Tyler was asked to open the newly refurbished Southdowns pub. This was a real treat as the food was amazing , photo's to follow, but we really look forward to working with these guys.
On Saturday we were treated to 2 events , the first being at the Pink Pub.
The lovely Janet had arranged for some of her regulars(male) to dress as Tyler's angels. Well the perfect hair,nails and outfits put us to shame.
It was then over to Tyler and Sally Austin to award the prizes, a very difficult task indeed, especially for the best boob category. Funds are still being raised for this event via a silent auction with 3 fantastic prizes up for grabs. Have a look at the Pink Pub FB page for more details .
As if this wasn't enough excitement for one evening , Tyler , Sally and myself went on to a fantastic 80's night disco, arranged by Matt Langotn and starring Ian Crouch DJ supremo.
Tyler was allowed to have a day of rest on Sunday and then on Monday he was off to the Observor awards to pick up an award from the legendary Fred Dinnage .
Apparently a discussion around age had everyone in hysterics. I have to admit that I didn't make this one as by this time I had gone down with a awful cold, but Tyler being the trooper that he is carried on .
We do not have all the money in yet from all the events but when we do I will post the figure.
This all sounds like a huge amount of fun and indeed it was but I have to remember the serious side of why we are doing this , to give a young man his future.
There are many issues that still need to be overcome not just for Tyler but for other's in his position. We still face on going difficulties in getting the education that is suitable and appropriate for Tyler . This has been going on for months , we have made some progress but it is very limited .
Likewise the lack of support for young people who are transitioning into adult services is of serious concern. Having attended a children's board in July the October meeting was due to discuss this very matter. At present despite numerous emails to the NHS I cant even find out when the next board will be . To me this is unacceptable the support is required now and there are changes that could be made without huge financial cost .
This begs the question where do we go next, how do we get people to listen. It is simply not acceptable to allow vulnerable young prople to loose years of their lives . Well I have tried the NHS route perhaps a political one is the next way. If anyone has any idea's on how we get people to listen please do let me know .
It really scares me that if our local community had not stepped in and helped us , how long would we have lived with a bed in the lounge.
This is only part of the picture though, how many people are condemned to a life on benefit because of the lack of support .
These issues have to be raised, heard and addressed. It can not be a single voice it needs everyone who is experiencing insufficient support to highlight this .
It may be that Charities can step in and help bridge some of the gaps,particularly if they can join forces.
However that is a battle for next year, at present my focus must remain on getting Tyler what he so desperately needs.
I don't have the words to describe the joy that I felt when I could ring the council to say we had enough money to book the surveyor. They must have thought that they had loopy lady on the phone as I was virtually in tears.
There are so many people that have helped to make this happen from Team Spirit,The Observor ,Tony,Chris at the Windmill, simply too many to mention but thank you from the bottom of our hearts.
We have a way to go yet but I honestly believe in my heart that we will get there . Once we have done so it would be amazing to think that maybe Tyler's Trust can work in conjunction with groups like the above to help other families.
There is so much goodwill out there and as a community I think something special has been achieved .
I must say a big thank you to Knights fencing who have agreed to only charge us for materials - thanks Danny and team.
I am starting to think about fund raising for next year already, I think a bake off would be fantastic, more quizzes and something called the Littlehampton Leap. More on that to follow, but if you have any idea's please do get in touch.
It is also becoming very clear to us that to allow Tyler to get to college we need a vehicle that will take a electric wheelchair so if you have any ideas on that please again do get in touch.
I have loads more to add but will keep it for the next update as I would hate to waffle too much .
One last point that I must add is that I am reading a book called Happy by Fearne, it is fantastic if you have ever been stressed or depressed , very inspirational . Its certainly helping me .
janice.ellis2@btinternet.com
https://www.gofundme.com/Tylersaccomodation
Tuesday 7 November 2017
NHS Needs to join up its services to support our most vunerable young people and become more cost : ***WHAT AN AMAZING COUPLE OF WEEKS, HIGHS ,LOWS ,M...
NHS Needs to join up its services to support our most vunerable young people and become more cost : ***WHAT AN AMAZING COUPLE OF WEEKS, HIGHS ,LOWS ,M...: THE FUN DAY What an amazing day , the wonderful Julie,Stephen,Stuart and teams pulled together the most incredible day . There was...
NHS Needs to join up its services to support our most vunerable young people and become more cost : ***WHAT AN AMAZING COUPLE OF WEEKS, HIGHS ,LOWS ,M...
***** Please take a minute to read about all the fun we had whilst raising funds for the Together For Tyler Campaign.Tyler pictured with Stephen from the Observor and Stuart and Simon from Spirit .
We are nearly at £15,000!!!! £5000 more and we can book the surveyor , please share this and help us reach the target before Christmas. Thank you to Wendy Hudson and Michelle Dodd for fab pics inculded.***************
THE FUN DAY What an amazing day , the wonderful Julie,Stephen,Stuart and teams pulled together the most incredible day . There was...
***WHAT AN AMAZING COUPLE OF WEEKS, HIGHS ,LOWS ,MEETING SOME WONDERFUL PEOPLE AND A BIT OF LAUGHTER TOO*****
THE FUN DAY
What an amazing day , the wonderful Julie,Stephen,Stuart and teams pulled together the most incredible day . There was everything from Bouncy castle,food,face painting ,stalls ,games football and entertainment . The sun shone and everyone had a wonderful time. Tyler looked amazing in his pumpkin suit and speed round like a demon keeping an eye on everyone .
The first Head to Head between Spirit FM and The Observor
Just for fun some little challenges were devised , the first one was at the Coconut Shy. It was Stephen P for the Observer and Stuart and Simon for Spirit.
As the last picture shows, I think that Stuart was rather pleased to win, in fact he was the only person to knock any off, and just to finish it in style he made in 2 out of 5. So the first challenge goes to Spirit .
Tony's 8th 10k
Tony also did us proud by completing his 8th 10k, his times just seem to keep getting better and better. I dont know who was more surprised me or him to see Stuart and Simon join him for a lap!!!! Well done guys I couldn't do that.
I think that after all that exertion they had just enough energy to make it to the cake stall !!!
Old Friends and New.
I was so touched at the amount of people that turned up to support us . I was quite emotional when I realised that Moira one of our life saving nurses from St Richards was there running the tombola. It was also simply great to have Sally A from Spirit there as well, such a busy lady it means the world when people give up their precious free time to join us . But a huge huge thank you to every single person who came along.
Elvis also went down a storm , he was brilliant, although one or two people were a tad nervous that he might try and get them to sing !
Football Comp
A brilliant game of footie was had with teams of mixed ages and ability , the final winning goal was scored by the youngest player on the field George Soothill at only 7 . What an achievement - well done .
Well I could talk about the fun day all day long but there have been other exciting things going on that I really want to share about .
At the Windmill shopping centre in Barnham , intially this was to solely celebrate Tony's last 10 k, but then we thought while not have a bit of fun at the same time.
Halloween Fun
The 2nd and 3rd Head to Head between Spirit and the Observor.
It seemed to good a chance not to add a couple of challenges in , the first one being :
Cake on a String , you have to eat the cake as quickly as possible with no hand s.
This is deceptively hard , you should really give it a go if you have never done it before. Its also incredibly funny to watch if you get the chance !!! Well I guess as long as you dont have to then have a go.
This challenge was between Stepehn and Stuart and the clear winner was Stephen, meaning it was now one each for both Spirit and Observor.
It seemed a shame to leave it at stale mate so we quickly followed that challenge with apple bobbing . This time for Simon and Stephen,
it has to be said that Stephen was a real pro at this and a clear winner . Bearing in mind it was really quite chilly by this point so they were all brilliant sports for even taking part. I also forgot to take any towels so had to run around and get t towels for them to dry off with .
This brings to head to head total , to 2 -1 to Stepehn , with more challenges at the quizes. I did hear Stuart mention at least it didnt involve custard this time , I cant help but wonder what that was all about , maybe someone could enlighten me ?
So I had the ribbon , we had everyone ready to cheer, Craig was watching for him coming up the road. Then with just seconds to go a delivery van arrived, we just got that moved and someone decided they had to leave, unfortunately it took them about a 10 point turn. I then ran to put the ribbon across and it snapped!!
Tony's last 10 k race.
Nothing however could take away from Tony's moment of glory, he ran his best time which is simply incredible considering he had just done 10 in 10 days . What an amazing and wonderful thing to do , simply awe inspiring, especially as he undertook the challenge to celebrate turning 50, anyone else fancy a go ?! He even managed to give interviews afterwards.
Huge thank you to Chris from the cafe and all the units that opened to help make the day special.
Money raised to date
Once all the money is collected in (may take a week or so), our grand total is going to be between £14,000 and £15,000. This takes us tantalisingly close to the £20,000 we need to be able to instruct the surveryor. If you have any thoughts,suggestions, idea's on how we can achieve this brefore Christmas please please do get in touch.
Up an Coming Events
Wed 29th Nov Spirit FM Quiz Bognor Football Club
Thurs 30th Quiz with a difference Chichester Park Hotel
December Eighties Disco
I have also just heard from the lovely Janet at the pink pub and they are arraning a fun evening involving dressing up.
Please do come along and get involved.
I must apologise to anyone that I havent managed to get a thank you out to yet. This sounds funny but it really wasnt, I started sneezing at 8am in the morning and it carried on for 12 hours non stop. Despite huge amounts of anti histamine it just wouldnt stop, it left me feeling a tad under the weathr .
Touch wood I now feel back to normal so I should be able to get on top of things again.
Being busy has also helped me put the looming date of the scan to the back of my mind. I am trying mindfulness to help with an over active brain, especially at 3am.
I have been told that I am taking on far too much just so that I dont think about other things, there is probably a lot of truth in this . I am not sure what the alternative is though. I was asked what I wanted for Christmas , but some things you just cant buy, I would give anything just to see Tyler walk up the street independently .
However thinking on them lines is no good to anyone , we all have paths that we may not have chosen , but it really is up to us as to whether we enjoy the journey or not . I have met some of the most inspirational and brave children who never moan or grumble , their courage reminds me of what is truly important.
I am also still plodding on with a gratitude list , sometimes it works and sometimes it doesn't. Just when I was trying to think about what to put on it for Saturday Ben walked in the door , how amazing is that . I was so thrilled to see him, it was lovely to just chat and catch up , we also agreed a lunch date for next weekend .I am so so proud of both of my boys .
I have loads more that I could say but I think that I have rambled on far too long for one day . A friend mentioned that the way to get your blog noticed is to post daily , I wonder if I could do that ...........
As ever if you have any quereies please do get in touch. If you do read to the end of this please could you send it to everyone you know, email ,FB,Twitter etc .
https://www.gofundme.com/Tylersaccomodation
https://www.spiritfm.net/features/together-for-tyler/full-story.phphttps://janiceell.blogspot.co.uk/http://www.bognor.co.uk/news/video-together-for-tyler-campaign-launched-1-8085080http://www.bognor.co.uk/news/video-fearne-cotton-backs-our-together-for-tyler-campaign-1-8155240
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