Dear Sir / Madam,

Firstly I would like to thank you for taking time out of what must have been a busy day to read about Jordan’s type of cancer. It was not long after Jordan had his second birthday 17-07-2014, that Jordan became seriously ill to warrant visiting the children’s hospital here in Sheffield.

I am asking you for some help in relationship to a young Jordan Reid who is now four years old. Jordan was diagnosed with a major mass on his brain on the 26th of June 2016, it was not until they operated on the right side of his brain that they found the mass that was causing Jordan to be seriously ill. The operation to remove the mass was only 95% successful, as the remainder was wrapped round his brain stem and his blood vessels. After the brain surgery Jordan started to have some serious setbacks which left him in ICU on a ventilator. After a few days on a ventilator Jordan was found to be struggling, so the intervention was that they put him into a temporary coma. The procedure they did next was the most frightening and that was when we as grandparents and Jordan’s mum and dad were told he might not pull through and the next 24 hours were critical. As well as being in a coma he was then put on an oscillator to help him breath. At one point we thought we had lost him but he fought back with strength and determination. He is now supported by a wonderful team of doctors and nurses who only have his interest at heart.

We were eventually given the results of the biopsy for Jordan, to find out that it was some form of cancer and that they would have to do further test to find out what type of cancer Jordan had got. It was then decided that Jordan start chemotherapy even though his full results were not known until several weeks later. When the news came through about the type of cancer Jordan had and how rare it was, I as his granddad wanted to find more information on this specific type of cancer. The cancer that Jordan has is called ATRT [Atypical Teratoid/Rhabdoid Tumour]. Whilst doing my research it was found that it was a very rare cancer here in the UK, where between 1 and three cases might be diagnosed each year here in the UK.

Because of a narrowing in his throat, they investigated with a video scope. This narrowing in his throat also makes it unsafe for Jordan to eat or drink anything. If he were to eat or drink there is a high percentage of it entering his lungs therefore causing aspiration and illness. Jordan from an early age has been unable to speak, he does manage to voice occasional words. It was found that his right vocal cord did not work and his left vocal cord was about 75% working. This has helped him breath slightly easier but may have had a knock on effect where by anything taken orally, would have to wait until a dye test can be taken to determine the path of fluids and solids.

It was also noted that he stopped breathing while sleeping because of these issues. The remedy was to have another surgery called a Tracheostomy. Now that he has his tracheostomy Jordan has to be under supervision 24 hours a day, this is in case he has any problems with secretion and so forth. Because of the tracheostomy we also have to carry around his machine for removing the secretions along with a medical bag of equipment and spares. With having care of Jordan there has had to be training given in how to give life support to Jordan in case of an emergency, so the hospital trained mum and dad alongside granny and granddad.

Jordan has and still is being treated at the Sheffield children’s hospital. Jordan Reid happens to be my Grandson. My grandson will be in and out of hospital for the rest of his life even though his life span has been severely curtailed. What i am looking for is if anyone can help the Jordan Reid trust get to charitable status. We are also looking for corporate sponsorship for the trust and also for the model railway project.

We currently have a project on the go at the moment and that is a 1-76 scale “OO” gauge layout. This layout is based on Sheffield station on one side and a modern container yard and dock side on the other with interchangeable section at either end, this will give a completely different look to the layout keeping people interested in what we are doing.

The aim of Jordan’s trust and model railway project is to with help us in raising the awareness of childhood brain tumours & childhood cancer in children like Jordan here in the UK. We at the moment currently running on a budget of zero, and that is why we try to attend as many of these summer fairs and fetes. If we were to get a willing companies cooperation or sponsorship this would help us spread the word of childhood tumours and cancers. This in turn would hopefully help us to achieve our goals. Our main objective is to try and raise the money so that we can register as a charity here in England and wales {£5000} but also in Scotland {0}. For this to happen we have to have a specific amount in the bank account we have set up for the trust.

I will attach to this email all of the letters of Jordan’s condition, I am also going to put links into this letter so that you are able to see what we are doing with Jordan and how we are doing it.

https://www.facebook.com/thejordanreidtrust/

The Jordan Reid Trust - Home | Facebook

www.facebook.com

https://www.facebook.com/jordanrailway/

The Jordan Reid Model Railway Project - Home | Facebook

www.facebook.com

I know that you were asking about, what we are doing and how we were raising our funds and the division of our funds. Our funding is done through donations and events we attend, however some places raise money for Jordan as part of a charity day. The division of the funding is set out clearly in the companies constitution where the funds are divided in a specific way. For example we divide between research, the local childrens hospital, and Jordan. We are looking to see if we are able to get funding for a static caravan ( as a family we were thinking of a double unit joined together to give other families that home from home feeling). I myself am looking at doing the research into this to figure out the costings and site fees that would be applied yearly for another project of a major size.

Jordan has at the old Norfolk park primary school on park grange road here in Sheffield a second major project. This project is a scaled representation of SHEFFIELD midland mainline station. The project so far has been completely self funded and we would like to try and get a sponsor so that we can keep this project running and taking it to the big model railway venues across the UK

We have just completed the first project that I had put into motion for Jordan and that was to have somewhere for Jordan to go outside to play. I have managed to have built a bespoke playhouse, a patio area and an artificial grassed area all on the one level so that it is safe for Jordan to play on.

He has a project on at the moment where we are needing more volunteers. We have a deadline date for this project and that is the 22nd November with a pre-show hopefully at the beginning of September. Jordan’s model railway project is a vast project which at this moment has basically been self-funded. We have had donations from many different and varying suppliers all willing to donate time and products to this railway project. I am going to be honest and say I have my sceptics that say I can’t do this on time. My answer to that is yes we can. I have been talking with Sheffield University and have some of their architectural students on board to help me out with it

http://thejordanreidtrust.co.uk/defaultsite

Yours sincerely

Kevan Adams (Jordan's Granddad)