Hi guys

I’m trying to rally to get Fletcher a pool for Christmas! Unfortunately Niele and Vince are unable to finance such a thing regardless of the 3 jobs Vince does weekly and due to Fletchers Illness being so rare there is no funding help from any organisations.

On the 14th of December it will be 2 years since Fletcher was diagnosed with JDM (Juvenile Dermatomyositis). A rare and debilitating Autoimmune Disease, which attacks his muscles, joints and skin. It can be potentially fatal and there is no known cause and NO CURE. This disease has effected every aspect of his life not only is this 6yr old boy fighting to survive this disease it has caused him to be highly UV sensitive. So not only does this disease affect all the muscles in his little body, the sun and even fluorescent lights cause it to accelerate and attack and destroy rapidly. So Fletcher and his family live like vampires avoiding the sun and harmful UV exposure and Fletch cannot participate is normal everyday activities or anything outdoors unless the UV index is low which is usually not until very late in the day. My sister and brother in-law do everything they can to make him feel normal by having as many indoor activities as possible.

Unfortunately Fletcher is being treated with chemotherapy drugs, and after almost two years in treatment, he has come a very long way since diagnosis physically, but he is still showing signs of active disease. Statistically this may mean that it could be a considerable amount of time before he is in remission.
As there is no cure for JDM, remission would mean no sign of active disease, and off all meds, but it could return at any time. All that is needed is something that triggers an immune response. This could be a cold, or virus, or even UV exposure. So Fletch will have to live a life of caution and sadly isolation.

I know to a lot of people in photo’s he looks like a normal little boy. That is because JDM is invisible. And Fletch has a beautiful nature and zest for life. He is smiling while he suffers. He will tell you he is great, but be struggling to complete simple tasks. He has great days, full of energy, and horrible days when he barely moves.
His parents have tried so hard to make his childhood as happy and normal as possible. What you don’t see is the horror this child goes through every month when he has to get a blood test as he has developed a massive phobia to this and it is a very traumatic experience though my sister has tried to get him help it’s been to no avail. She has the painstaking task of administering his methatrexate (Chemo) weekly not only is it another needle to be scared of its a painful one. This makes him very lethargic and generally unwell for a couple of days following.

As most people know the best exercise to strengthen muscles is swimming. Though we live near a beach Fletcher and his family can only go very late afternoon. He is unable to learn to swim at local pools because Fletcher's immune system is suppressed to stop it attacking him, and this has left him vulnerable and unable to fight off colds, flu and viruses. A simple illness can get out of control quickly and often requires hospitalization I. Something that may not be much to us but could be fatal to him. He has a little brother Harvey who is 4 and is also affected by this as my sister is unable to take him to the local pools for swimming lessons or even recreation with the fear of bringing illness into the house.

A covered swimming pool would help greatly in Fletchers fight against this horrible disease to strengthen his muscles so this disease doesn’t destroy them all.
I know this is a big ask so close to Christmas but if I could do it myself I would.
I’m not after anything fancy just a pool that he can do physiotherapy in and the boys can also play in and enjoy whilst shaded from the sun. To benefit Fletcher the most it will also have to be saltwater or mineral, as chlorine is not good for sensitive skin.

My sister would never ask for anything herself, she has her sights set on the big picture and funding research, and helping other families navigate this road. My sister and her friend Aimee who’s daughter also suffers this disease have founded the first charity in Australia to support this disease and others that are affiliated with it. Their name is JM Joey’s. Hopefully in the not too distant future they will be able to assist families with any aids they need to benefit these suffering children. JM Joey’s have a FaceBook page if you are interested or you can follow Fletcher’s fight on FaceBook through Fletch V’s JDM. If you wish to know more about this disease you can also visit www.curejm.org.

I’m not great at asking people for help as those who know me personally would know but I would really appreciate any kind of donation to make this happen for my gorgeous nephew. I want to give him every fighting chance possible and this is only thing his parents are unable to provide. Niele and Vince are unaware that I am doing this but I’m sure it won’t take long for them to find out. Don’t listen to them if they say no this is something I have chosen to do for my nephew. Vince is always working and Niele spends every spare moment and many late nights working on JM Joey’s and trying to make things easier for other families. (She may ask for her house key back. Whoopsie! But I had to get the bank details somehow ;P)

If by chance I am able to collect enough money for a pool with a cover and there is anything left over it will go towards covers for the fluorescent lights in Fletchers class room which are also highly expensive, but will benefit him greatly. I figured I know enough people on FB that may help but I also hope you pass this on through your FB friend.

Any donations however small or large be put into Fletchers personal account as this is for him personally not for JM Joey’s. If you are unable to donate please pass this on to everyone on your FB friends list and at least create awareness for this disease.
 
 Thank you for your time

Yours Sincerely



Leah Reynolds
Fletcher’s Aunty and No 1 fan

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