Welcome to the Dylan Kelsall Trust Website - www.dylanstrust.org

Dylans Trust Logo designed by Lauren !

Dylan at Xmas 2005

News/Events & Original Gallery                     

Hi everyone, here is what happened recently and what's happening in the Future

 

 

May 2011

Planning Application

For Dylans Extension has finally been submitted. 

Its been a long tome coming, what with all of he events that have gone on in our lives over the last 3 years.. 

If everything goes to plan, we will be setting up a new page just for the build. All sponsors will be greatly accepted, 

TIME

MONEY

MATERIALS 

January 2011

Been to See Panos (Mr Tuckers Fellow)

Dylans screws in his vertebra are progressing well. Still waiting for the two verterbra to become "fused" at top and bottom.

November 2010

Spinal Growth Rods

Mr Tucker

Great Ormond Street Hospital

Dylan has had his rods inserted and it was very very painful.

He grew 5.5cms in 1 day, His spine is straighter but still over 40 degrees

April 2010

Meeting Mr Tucker

Dylan has been to see Mr Tucker of Great Ormond Street Hospital. He has decided that Dylan would be better off having Growth Rods installed.

February 2010

RJAH Spinal

 We have had some bad news today. We have been told that Dylans scoliosis is getting too stiff and Mr Trevedi thinks that its best to do a "definitve fusion"

We are now going to look into getting a second opinion.. :-(

January 2010

Dylan's now a BIG, Big Brother

Mum gave birth to Danyl Blake Kelsall,

December 2009

 We managed to raise a massive 1086

Thanks to Everyone who brought raffle ticket and Thanks to everyone who donated prizes for the Raffle Held in Tesco Express Meir Hay. Thanks also to the carols singers & Mrs Wilkes.

Our Special Thanks go to Mandy and Jason (Tesco), without who, all of this would not have been possible.

December 2009

Tesco Express

Meir Hay

Raffle and Fundraising

We are holding a fundraising day at Tesco Meir hay Longton on Saturday the 19th of December.
Santa will be there and we are holding a Grand raffle- Prizes include 100 cash, 50 Tesco vouchers, Meal for two, etc
There's loads going on on the day including name the bear
Please come along and show your support :-)

November 2009

RJAH Oswestry

Dylan has been back to see orthotics today and They are happy with how he is perserving with his cast. They have now added extra pressure on 3 points within the cast as to push the spine even move. It is very uncorfortable for Dylan. We will have to see how things go.  :-(

September 20009

Tesco Fund Raising for

Muscular Dystrophy Campaign

Thanks to Everyone who gave money at our "Strength in Numbers" event. We managed to raise a massive 495 for Muscular Dystrophy Campaign.

September 2009

BACK TO SCHOOL

Dylan is excited about getting back to school. We went today a day early to have meet Mrs Wilkes, Dylans new teacher and Miss Dudley, her teaching assistant. We also met up with Miss Hurst, Mrs Hampton and Mr Davies. Dylan is really looking forward to school tomorrow

August 2009

Holiday in Abergele

We have been for a break with Grandad in his caravan. Aunty Narna, Siana and Steve came over on Monday and we all went down to the beach. Dylan went paddling, built sandcastles and collected a lot of sea shells. Dylan took 

August 2009

Big School Holidays

Dylan has done has been to a few places whilst on holiday. Amerton Farm,  Dimensions, Hehe's and Westfield Centre to name a few

July 2009

New Spinal Cast

Dylan has had a new cast, it is adjustable and we now have to pull it in. We are trying to contain his curve as much as possible

June 2009

Trish Running the Potters Arf

Trish has ran the "Potters Arf" Coming in at 1 hour 50 mins.

Well done Trish !!!! Thanx for your support !!!!

May 2009

Spinal Review @ Oswestry with

 Mr Trevedi

Dylan's Spine is at 63 degrees. The New cast is not correcting the curve as well as we had hoped it would. Also to make things worse Dylans spine is rotating, causing his right hand rib cage coming out at the back. Both the curve and the rotation is a worry for us and his spinal consultant. They are talking about "fusing" the thoratic part of his spine. Which means his torso would be the size of a six year old and the rest of his body would continue to grow normally. Giving him a "stunted Torso" There are also problems if the can only do the major operation through Dylans Back, as they will only be able to fuse the rear of the spine, which means that the front of his spine will continue to grow. Mr Trevedi would prefer to go through Dylans chest and back. At some stage this worrying operation will need to be done. This is really scary, something that we want to put off for as long as possible

May 2009

Dylan's Extension

The Prelim drawings have been drawn up. There are a couple of changes to pass on to Jon. Then we can look at elevation drawings.

April 2009

Heather, Jon and Dave from DRT

We have had a site meeting today, to get some prelim drawings on paper. Encompassing the 1700mm required clearance for Dylans powered wheelchair. Hopefully we should have them soon.

March 2009

Heather has visited us at home

Heather has been, we have been talking about Dylans Extension, to make sure that everything that Dylan will need in the future can be accommodated in the new extension. She is now going to speak to Jon the Architect.

January 2009

Dylan's become A BIG Brother today

Baby Dexter, was born today @17.34, weighing in at 5lb 13 oz. He is 49cm tall. Dylan is really excited to see him !!!

January 2009

Disability Resource Team

We had a review meeting with Heather, and Dave. Looking at the proposals from  Jon the Architect

We reviewed the plans and after taking a great deal of advice from the Muscular Dystrophy Campaign "Adaptations" Manual Book. We have all agreed that the proposals, perhaps could be better designed to help Dylan in the future. So Heather and Dave have taken the details back to John the Architect. PS Hope you fun on the slopes, Heather !

January 2009

Zoe's Been to School

OT Zoe, to look at Dylans ability to use a Laptop for Dylan to do some of his work on. (He finds it very difficult and tiring to write with a pencil, because of the pressure that is needed to write on the paper)

January 2009

Shiny New Red Football Cast

Dylan has got his new Cast, it is very stiff and the "curve" has been straightened out a lot on the cast. It's taking sometime for Dylans back to adjust to the new shape. Hopefully by the time he has his X Ray for Mr Trevedi (Spinal Consultant) then is will show a vast improvement against the last one. (We all really don't want Dylan to have another PLASTER cast) It is so restricting

December 2008

SANTA's BEEN

Thank you to everyone who sent presents for Dylan to Santa this year. Dylan thinks they are all Great. (Apart from the clothes, "Why do I need more socks?" He even got 2 presents that he only told Santa about.

December 2008

That man in the Red suit is coming soon.

Mr Chris Tingle I think his name is, or is it Saint Nick ?

Dylan has written his letter to Santa.

He will be very busy this year.

December 2008

Spectra Blitz Wheel chair

A big thanks to the Wheel Chair Services. Dylan has taken delivery of a Spectra Blitz Electrically Powered Wheel Chair. This hopefully means that he will be able to keep up with the other children in the playground as he was feeling isolated as most of the other children run around and he couldn't keep up. It also means that when school go to church, Dylan can actually do this.

December 2008

Child Development Centre

Dylan has been for his review at the CDC today, with Dr Davidson, everything is looking ok.

December 2008

Occupational Therapy has been to school today.

Zoe has been to school today. to measure Dylan up for a Special Chair at home to help Dylan to get himself dressed.

Its the little things like this that give Dylan his independence

December 2008

Orthotics Cast Measure

We have been back to RJAH and seen a new Orthotics Consultant, been measured up and they have decided to go quite aggressive with Dylans new Jacket. Hopefully it will be done before the new year.

November 2008

We went to see Dylans Baby Brother today. Even Though He hasn't been born Yet.

              We had a 4D Scan at                Life Through The Lens

It was FANTASTIC, we could all see his little Smile.

If you or anyone you know is having a baby, then they really need to have a 4D Scan done.

www.lifethroughthelens4d.co.uk  

November 2008

"Help a Signal child"

Dylan has been lucky enough to be selected for a gift from the "Help A Signal Child" event

We would like to give a Great BIG thanks to all at Signal Radio for there very kind donation of an Electric reclining/stand up chair.

This will be really beneficial to all of us, helping Dylan to get out of the chair by himself and letting him get comfy. Infact he its that comfy that he does everything in it. reading, writing, eating and watching telly

October 2008

Dylans Birthday Party  @ Funsters

We hope that everyone had fun at Dylans Birthday Party

Thanks to everyone for Dylans wonderful presents

September 2008

Sponsored Sky Dive

Catherine Taylor is doing a sponsored Skydive at Black Knight in Blackpool.

The Skydive @Blackpool was postponed due to weather

Cath's dive at Blackpool was delayed due to bad weather, so she Booked another within days and Jumped in Nottingham.

The dive was excellent, Catherine was slightly scared, but the young, strapping man she was attached to, helped calm those nerves.

Well done Catherine and Thanks to all of the Sponsors

August 2008

Dylan & The Winning Team

The Funday Raised nearly 900

Signal Man FC won the DylansTrust Cup

Excellent day had by all. Big Thanks to Lisa and Karl @ the Signalman, for all their help and support. Also a massive thanks to Deb and Arthur Carr for Helping to organise the day. We also got into the local newspaper The Sentinel

Thanks to everyone who took part.

August 2008

Football Fund Raiser

Dylan's Uncle Jon, plays football in a couple of pub teams. They have kindly offered to do a Fund Raising day for Dylan.

So lots of planning, there will be a Match at the Fire Station Rec, followed by food, drink and raffle at "The Signalman Pub". Details Here. Everyone is welcome to come and join us.

July 2008

Big 6 weeks of school. Dylan can't wait. Hopefully Dylan will have his Plaster jacket changed early in the 6 weeks holiday.

July 2008

Nigel Rathmel, Educational Physcologist Visited school today to assess Dylan in school and in view of his pending move to Key Stage 1. Trying to give Dylan the inclusion that he needs to have at school. Also to assess what additional care Dylan needs at school.

July 2008

Had a meeting with Heather, Dave and Jon the Architect, to discuss details / ideas about the extension. They have gone back to the office to put some designs together.

They are looking to future proof it as much as possible. We really want to have Dylans Bedroom and bathroom with us on the first floor. We have real concerns about Dylan being on the ground floor at night. We don't want him to feel isolated and he is quite timid really.

July 2008

Our OT Heather visit recently to talk about Dylans needs for the Future.. She is very good, really enthusiastic and always smiling.

July 2008

Spinal review with Mr Trevedi. We are hoping to try a different Spinal cast, because the cast is just to contain and not correct Dylans spine, until such time that the "Growth Bars" can be installed.. 

July 2008

Due to our recent good news, Guys Hospital have expedited the Muscle/Skin  tissue tests. It appears that the gene is a Dominant gene, and they have found a "New Mutation" We have had our Bloods taken and processed by Guys.  Now just waiting the results.

Dylan took photos of Daddy and Mummy have our blood taken. He doesn't like needles, so was taking the photos from the doorway.

July 2008

Dylan is going to be a BIG brother

The "New Arrival" will be with us in late Jan/ early Feb 2009.

Dylan is really excited about being a BIG brother..

He says that he will help and will share his toys.

June 2008

Brendan is running the Potters Arf Marathon on the 8th.

Need to sort out a T shirt, for Brendan

Brendan ran the Potters Arf. He wanted to complete it in less than 1hour 55mins, to be a time set by his friend last year.

He came in at 1 hour 54 mins. He is really pleased. We have yet to collect the sponsor money in.  Thanks to Brendan, we are over 600 closer to reaching our target.

 Some of the Photo's are in the gallery

May 2008

Appointment with Meredith and Gary Gordon @ RJAH.

 

Went back to RJAH. To get measured up for Dylans Insoles. Met up with Meredith, She is going back to Oz for a year.

Gary has measured Dylans shoes/feet for insoles. He is going to try and put a wedge into Dylans school shoes. But we have got two insoles to be going on with. A Red one for right and a blue one for the Left. They just fit in the back of Dylan's trainers to lift a little.

May 2008

Review with Muscle Specialist Ros Quinlivan

Also Physio review with Meredith

We've back to RJAH. We saw Ros, Carolyn and Meredith

Dylan has been referred for a "Kay Walker" and a Power Wheelchair. Meredith also thinks Dylan will benefit from "insoles", because his ankle tendons are beginning to tighten.

April 2008

Dylan has been back to RJAH Dylan has been back to have his new "Plaster Jacket" fitted.

Everything went relatively ok this time. The new cast is on, its a lovely bright Red. For some reason it is Extremely Heavy. I don't know why, it just is !

Dylan wasn't travel sick this time, which is good

March 2008

Dylan admitted into Keele University Hospital.

Really poorly

Dylan has been very poorly over the last few days, Sick all the time, he couldn't keep anything down. He was admitted to into hospital early hours of Tuesday. He looked so ill, his face was white and his eyes were red. They had fun putting an IV drip into him, He screamed the place down. Poor thing doesn't like needles anymore. We spent a couple of days in there and Dylan came out feeling and looking 200% better. So much so that managed to go to George's Birthday Party at Funsters

March 2008

We are waiting to hear from Oswestry, to see when Dylan is to go back for his new cast Dylan is moving about much better without his cast on. However his curve seems to be coming back, so days it looks worse than others. BUT he is enjoying the  swimming and soaking in the bath !

March 2008

Dylan went back to RJAH on Thursday 13th March. He had his jacket removed at the request of Mr Trevedi. He complained of back ache on the way home.. We think that is because it's been so stiff, for so long and also that the cast is giving him support.  Dylan is back at school on Monday, we will need to be careful with him, because he is very tender and fragile.

We are looking forward to lots of baths and lots of swimming.

March 2008

Dylans Jacket is causing us some concerns, we are trying to contact his Spinal consultant Mr Trevedi, to review it Hopefully we can get back to Oswestry and get a decision from Mr Trevedi.. Dylan's back now hurts when he tries to lean forward. We didn't have this problem before.

Whilst on Alice Ward @ RJAH, Oswestry

We met to lovely little girls, Mia and Nakita, both had been through a operation or two for Perthes Disease They are in for two weeks doing lots of physio and hydrotherapy. Good luck hope you get well soon and with a bit of luck will play again soon.

20th & 21st & 22nd February 2008

Finally back at RJAH, "Jacket" has been replaced.  Rooney had his plaster cut off as well. Now he has got another one on. (Dylan wasn't too well and the cast is very tight) We are monitoring his breathing Dylan's new cast is White. He had white because he wants a rainbow painting onto it. Nothing fancy just a rainbow with children sliding down it. Dylan absolutely loved his session in the Hydrotherapy Pool, he really loves swimming.

4th & 5th February 2008

Dylan is Back at RJAH, for his "Jacket" to be removed and another refitted. UPDATE ! Unfortunately the Plaster Technician was double booked so Dylan didn't get to go swimming. Due to be rebooked soon. On Monday 4th, the cast will be cut off and Dylan will be able to have a bath for the first time in over 3 months. Then go swimming in the hospital pool. He is really looking forward to both the bath and Swimming.!!.) Then sometime on Tuesday, he will go down and have another "jacket " fitted.

Merry Xmas & Happy New Year

We hope everyone had a great Christmas. Thanks to everyone for the wonderful presents. We still haven't managed to get in touch with everyone.

So please can anyone who has sent us a email before, send another one.

COMPUTER CRASHED

Our Hard drive crashed, resulting in all of the lovely emails sent by everyone being lost, some photos and other important items all gone and no computer, to update the site. We have got a new hard drive and that is now up and running.

So anyone who has sent us a email before, if you could send another then that would be great. It would be good to hear from you again.

November

We are planning a surprise ride for Dylan Ssssshh Don't tell him but it's in Santa's Helicopter.

The Helicopter ride was GREAT, Dylan really enjoyed it, even sat in the front with the Pilot. Photos are at www.DylansTrust.org/DylansPhotos

17th & 18th October 2007

Dylan is going into Robert Jones & Agnes Hunt for his Plaster jacket to be fitted  Jacket has been fitted, It's quite Heavy. Dylan grew by 5cm and put on over 7lbs in 1 hour. Dylans curve went from 76 degrees to 42 degrees. Great News ! 

The  Nurses were all brilliant !

14th October 2007

Dylan, Rooney and Jared went to Gulliver's Kingdom, Matlock. For a Birthday Treat Photos in the Gallery. (Rooney Rabbit is a School Award, He goes on travels with Groups from school and Trips with Teachers) He has travelled as far as Egypt !

5th October 2007

We ran a competition @ Dylans School, to design a logo for the website. We have a winner and that is Lauren Myatt, (Yr6). So a BIG THANK YOU and Well Done. Hope you like the Prize Lauren.      Happy Smiling Faces, that's what we like to See !!

September 2007 

The BIG Push for Muscular Dystrophy Campaign Walk being held at Trentham Gardens, Stoke on Trent. We have a number of family and friends joining us to raise money for MDC. Photos in the Original Gallery soon ! - Everything went well. The Sun come out to see us, but it was very windy.

10th August 2007

Dylans MRI @ Oswestry 40 minutes lying in a MRI machine, more than enough for anyone let alone a 4 yr old boy. Trying to keep still !!

6th August 2007

Dylan's Spinal review @ Oswestry We have been back to see Dylans Spinal Consultant, Mr Trevedi @ Robert Jones & Agnes Hunt, today. Unfortunately, Dylan's curve in his spine has worsened. It was 40 degrees in Nov 2005, 63 degrees in Feb 2007 and now 76 degrees today. So the decision has been made to fit him with a "Plaster Jacket". Which we believe means that Dylan we be sedated, stretched and have a plaster cast jacket fitted.

Football Fundraiser is back on again 1 Year on ! Who is going to win ?

Trish ran the "Potters Arf" on behalf of Dylans Trust an raised over 200. Thanx Trish

Caths Sponsored Sky DiveRaised over 380.00. Thanks Cath !!

Football Fundraiser "Signal Man Vs Ashwood"

Brendan Deaville's Sponsored "Arf Marathon"

 

If you would like to arrange, or be involved in any events, please use "Contact Us" to have a chat.

Copyright Warren Kelsall 2006. All rights reserved.

Home

Information

AimsNews/EventsLinksDonateGuest BookGallery

Contact Us