NHS Needs to join up its services to support our most vunerable young people and become more cost : **Fantastic Night Out,Frustrating News and a Scan ...

 **Fantastic Night Out,Frustrating News and a Scan ...: Spirit FM Local Hero's Awards This was such an amazing night out, we were made to feel special right from the very moment that we a...

: **** Parent of the year !!!**** Cant quite believe it

 **Fantastic Night Out,Frustrating News and a Scan ...: Spirit FM Local Hero's Awards This was such an amazing night out, we were made to feel special right from the very moment that we a...

**Fantastic Night Out,Frustrating News and a Scan Date***

Spirit FM Local Hero's Awards

This was such an amazing night out, we were made to feel special right from the very moment that we arrived.

It was a real pleasure to meet Danny ,Wife and team from Knights fencing,  they made perfect companions for the night .

I almost felt like we were at the Oscar's everyone was so dressed up and looked amazing . Even Stuart and Simon scrubbed up pretty well.

We enjoyed a 3 course meal followed by entertainment courtesy of Martine McCuthon.

Then it was onto the awards part of the night ,there were so many amazing and inspirational  people present, it restores your faith in humanity . We always hear such awful things on the news , it was lovely for a change to hear positive news about our community's unsung hero's.  I do struggle to feel that way about myslef though.

It was especially lovely to meet the Wiggingtons,the family that won the Bravery award. Tyler's Trust had not long done a box for little Daisy and family, it felt really special meeting them and it was quite emotional .

My award for Parent of the Year was the last one to be presented. As many of you know I am more than happy for Tyler to be in the spot light rather than me . By the time it came to my award I was a tad nervous to say the least .

As Tyler had made a joint nomination with my sister Karen and family friend Lisa he came up with me. This may not sound much but in view of how difficult this was for him ,it meant the world to me. He was using a wheelchair for most of the night , as we walked up everyone could see just how much effort was involved and everyone started to stand up and clap . Tyler was his normal cheeky self and was giving out little waves to everyone .

It was really emotional and that was before I heard the video nomination . Tyler's words were so heartfelt and they meant the world to me, better than any present . When Karen's and Lisa's words were added lets just say I didn't have any mascara left!!!
A huge thank you to Sally,Simon,Stuart,India, Robyn and everyone at Spirit who worked so hard on this . Its a night that I will never forget.

It was incredibly special to receive this award, although I am sure that any parent in my position would do the same . It also helps to highlight some  of the    issues that families in our position face.
The evening was even more special as Craig and I celebrated our 10th wedding anniversary .

Not too much difference ! I cant believe that we are at 10 years , Craig has been my rock through everything, so here's to the next 10 .
Courtesy of Bognor Motors we had won a camper van weekend , so straight after the awards we took off for friends in that . A truly special weekend all round .

Back to Reality

I had managed to switch off for the weekend and found it very hard coming back to reality.

We have encountered a further difficulty in getting Tyler the help he needs . This time with education . The situation is very complicated but basically Tyler is to have a college education in the 6th form of his old school.

This has been in the planning for months and months and we have had endless meetings . Unfortunately on his first day (for 2 years) the teacher turned him away .

Basically she felt that there had to be a TA in the room at all times. Tyler has an Education Health Care Plan which protects education until a young person is 25. This is how funding is obtained for extra support such as a Teaching Assistant. However for the plan to kick in a young person must be well enough to attend a full time course.

Tyler is only able to attend very part time, so the plan cant kick in , so the support cant be obtained, the result being no education for Tyler.

At a local level everyone has been doing everything that they can but they have hit this red tape and cant seem to find a way round it . Meanwhile yet again the weeks are ticking past .

I am going to be raising this issue with as many people as I possibly can. This wont just be affecting Tyler and it  is an issue that needs addressing desperately. If it isn't the system is condemning a whole group of young people to a life on benefit.

At present we are on the hunt for a very part time TA who may be able to help us out. I must mention Helen at the council though who is helping to save my sanity over this .

If anyone can help me raise awareness of this issue please do get in touch . It seems so unfair to me that there is obstacle after obstacle in getting even a basic education . Tyler had already accepted that he would need to change course as the media had changed from module based to exams. It really does make me so angry .

Onto more pleasant things ...........

Together For Tyler

We were thrilled to go over to the Appledram centre last week , where we collected sponsorship money from the team who had raised over £700.! It was organised by the lovely Lillian who had herself had a brain tumour at the age of 2, thanks guys.

Up and Coming Event s

Family Fun Day Sat 28th Oct Barnham Community Hall.

Please do come along and join us for what promises to be an amazing day. There is football,food,entertainment , all sorts of things to keep you busy.

You could also come along to give Tony a cheer who will be best part through his 10 x 10k races in 10 days .

Thank you to Julie who has worked tirelessly to organise this .

Halloween Event Windmill Monday 30th October.

Come along and join us for Halloween fun , fancy dress comp for the kids,treasure hunt,raffle,tombola ,refreshments. 

See Stuart McGinley from Spirit and 

Stepehen form the Observor 

go head to head on eating a cake on a string .      

Moving into November

Wed 29th Spirit FM Quiz night Bognor Football FC

Thur 30th  A quiz with a difference , come to find out more .

It would be lovely to see you at one or all of these events.

With all this going on I really really hope that we can instruct the surveyor before Christmas , but we are not there yet , so please help if you can .
It is the kindness and support of our local community that keeps us going when things get tough.

Lunch Date with Ben .

I had arranged to meet Ben in Portsmouth for lunch. I was absolutely amazed on the Sunday in question when he just walked into the lounge! I didn't realise just how much I was missing him until then.
He is throwing himself into his studies and this year he is able to enjoy the whole uni experience.  
We had a lovely meal at the Harvester and I dropped him back to his house share . Hopefully we can repeat the experience soon.

Tyler's next scan date is through, which I need say no more about . Hopefully it will be good news for Christmas.

Please do get in touch with any thoughts,suggestions etc 

Jan 
Avery proud mum

janice.ellis2@btinternet.com

https://www.gofundme.com/Tylersaccomodation

https://www.spiritfm.net/features/together-for-tyler/full-story.php

https://janiceell.blogspot.co.uk/

http://www.bognor.co.uk/news/video-together-for-tyler-campaign-launched-1-8085080

NHS Needs to join up its services to support our most vunerable young people and become more cost : ***** What a day, but some very sad news as well**...

 : ***** What a day, but some very sad news as well**...: A Tribute Before I talk about the fun day I must pay tribute to an incredibly brave young lady and her family. Molly was due to be our...

***** What a day, but some very sad news as well****

A Tribute

Before I talk about the fun day I must pay tribute to an incredibly brave young lady and her family. Molly was due to be our guest of honour and although she was there in our thoughts she was simply not well enough to travel. I was heartbroken to hear that she has now gained her wings, my thoughts and prayers are with the family and I just wish that there was something that I could do to help. We will always think of Molly at our fun days and she will be on our new banners if the family still want us to pay tribute to her in that way .

The Fun Day

What an absolutely wonderful amazing day ! There was something truly wonderful about the afternoon, it's really hard to explain unless you were there, but it was truly special.

The afternoon started in style for Tyler when he was picked up by Sporting Bears in a green Lamborghini, it matched his hari a treat !!!! The guys and gals from Sporting Bears were simply incredible, they brought even more cars than last year . The children (and adults) could just keep going out over and over again , this event simply wouldnt be the same with out them, in fact I dont think that I would dare hold one without them. It feels like they are part of the Tyler's Trust family now , so a huge thank you to Marcus and crew .

Another huge hit - The Owls

Who knew that they were soooo gorgeous and soft, it was amazing for the children to be able to hold them ,what a treat. I ran out of time to try and get a pic of me holding one so pleeeease come back next year guys.

 In addition to this the children and family could enjoy having a pamper with their hair and make up being done , followed up by a pic with our own fab photograper Wendy. There were also some amazing princesses for fourther photo shots(Tyler was particularly thrilled that they were there again) and of course our very special patron was there , the lovely Fearne.
 It was really special as she brought Jessie with her this year and it was the first time that we got to meet him, Tyler was chuffed to bits , it all adds to that family feeling. They have such busy lives and it means an awful lot that they make the time to come along , again it just wouldnt be the same without them.

So after the children had enjoyed all of the above and arts/crafts/cake decorating/games/tatoos and golf to name a few activites it was onto food.

 Food
I have never seen quite as much pizza but it all seemed to go , we had a real treat afterwards thanks to the amazing Caroline's diary .I can honestly say it was the best ice cream that I have had , the Strawberry was lovely , in fact a 2nd pot called to me and lets just say there weren't any left . This lovely diary is based in Chichester and I have just had a lovely conversation with Caroline. The diary actually donated a large amount of the ice cream and it is this sort of local support that is so invaluable, and really appreciated , thanks guys. I hope to get over to visit them soon , its always lovely to put a face to a name, although Caroline does look very familiar from her pic!

Toy Tombola

After all the excitment of the afternoon we wanted to ensure that each child had something to remember the afternoon by so each went home with a gift . I have never seen so many happy relaxed faces. It means the world to us to be able to give our families an afternoon where they can forget hospitals,appointments and treatment plans. It is also hugely beneficial to be with other families who are in similar postions , the emotional support is invaluable .
To ensure that all families could attend we made sure everyone had travel expenses if needed. The aim of the afternoon was so that no one had to worry about anything. 

I have to say a huge huge thank you to each and every volunteer who made this day happen, it was a real team effort . In the build up to any big event I always say never again but next years is being booked as we speak .

Future plans
The Trust wont get any bigger georaphically but we aim to increase the services that we can offer to these amazing local families . For most of our families at least one parent has to give up work that puts a huge emotional strain on finances and treats can go to the bottom of the list . Thats why things like the home essentials kits can be an invaluable help . 

Apologies
I must say sorry as I am very late in sending out lots of thank you letters, as many of you know Michelle and I turned 50 this year and we in our wisdom booked our spa holiday for the day after the fun day !!! This meant everything got put in a folder awaiting our return. I am now slowly ploughing through everything .

The holiday was amazing from the moment that we arrived at Gatwick it was relaxation all the way. We started off in the No/ 1 lounge and carried on in the style that we had started off in .

Day one was a Turkish bath and massage, then lots of sun bathing ,sight seeing and relaxation . I didn't realise just how much I probably needed a break, it also went through my mind that Craig could really do with one as well. Well maybe when he is 50!

So its now back to reality and slowly catching up on everything .
Together For Tyler
Lots of events coming up for this including Family Fun day Sat 28th Oct,Halloween/final 10 k race Mon 30th Oct and a quiz on 30th Nov. Please do come along and support us if you can .
We have now reached the £10,000 mark and desperately want to hit £20,000 so that we can book the Surveyor prior to Christmas, can you help ? We are also looking for raffle prizes for various events , or maybe you can host a dress in green day or coffee morning. Please do get in touch with your thoughts .
Apologies if this blog is far too long , just so much to share , more details on TFT campaign very soon .

My last comment , Ben is now settled at Uni with a lovely group of friends and I am thrilled for him. I also miss him like mad, this is the longest that I have not seem him for , I hope there is a half term soon .

Janxx 

janice.ellis2@btinternet.com
https://www.gofundme.com/Tylersaccomodationhttps://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-1-8085080