At the 2018 event we raised a fantastic £13,736 for the charities! This was split between the 2 charities we were supporting,
Helen & Douglas House and Thomley.
In 2019 we will be supporting two families and raising money for their two children for life-altering operations that they both desperately need. Please help us to raise the funds for these good causes, and help to change the future for these children.
Let's Get Ellis Active
Let's Get Ellis Active
This is my Son Ellis. He is 2 years old from Leicester. Ellis was born with Arthrogryposis Multiplex Congenita.
Arthrogryposis Multiplex Congenita (AMC) is a term used to describe over 300 conditions that cause multiple curved joints in areas of the body at birth. It varies from person to person with the commonality being stiff joints and muscle weakness.
Ellis is affected in all four limbs and joints all over his body. This affects his day to day life as he is unable to use his limbs like most other children his age. This has impacted my whole family too.
It breaks our heart to see his sisters try their very best to do things for Ellis. Ellis can not just get up and go and be the two year old he deserves to be. Ellis does scoot around on his bum and he tries so hard to get up. He just needs this to surgery to give him this massive opportunity to walk!
Ellis has come such a long way since birth. He has shown great strength and determination and he continues to inspire us daily. The doctors told me not to expect a lot from him. But guess what, he’s proved them wrong and continues to every single day.
Ellis has had serial casting from two weeks old and two operations so far to try and straighten his feet to get them in a natural position. We use physio and stretching in his everyday life which is very crucial with this condition.
As parents we have done everything we can for Ellis for him to be where he is now. His knees are flexed and cannot stand unaided. And so, we have recently been in touch with a doctor in the U.S who specialises in his condition.
As medical care in America is extremely expensive. He’s agreed to do the operation in Poland. The cost of the operation is invoiced at £80,000. Doctors are confident that Ellis will soon walk. This is amazing and so overwhelming.
We need your support. Thank you.
You can help raise money for this great cause by donating directly to their campaign page - http://campaign.justgiving.com/campaigns/charity/just4children/letsgetellisactive?social_utm_term=afdpvsvao
The Charlie Stephenson Legacy
The Charlie Stephenson Legacy
To charlies army,
The love and support each and everyone of you have shown over the past 20 weeks, has been more amazing than we could ever put in to words. With shattered hearts we wanted to tell you all, that on Friday charlie gained his angle wings. We love you all and thank you so much for everything you all have done.
No more yucky medicine, no more wires and tubes, no more pain. Charlie forever loved go run and play now love you always our little boy. xxxxxxx
The money that has been raised through the Funding Neuro page will be devided up. A portion will pay for Charlie's much needed medicine and the rest will be passed on to help another child so they dont have to endure this awful process of having to raise funds for treatment. Anyone that knows Charlie will know what a kind boy he is, and he will be happy knowing he has helped another child.
I will keep this crowdfunding page open, and anyone willing to donate with upcoming planned events can help towards making memories for Tony, Soeli and Charlie.
Tony and Soeli want to thank all of you from the bottom of their hearts for trying to help them stay as a family. They have been overwhelmed with the love and generosity they have been shown.
Please if anyone has any questions or concerns please dont hesitate to contact myself or Louise Sinclair We will help with anything we possibly can.
I'm sure you are all with me in wishing Charlie and his family all the love in the world, whilst they spend their precious time together.
Love to all of you, and please make sure you make the most of every second with your loved ones.
You may wonder what this is all about?
It's about an every day family, that have been together for 25 years, then nine years ago on the 26th May 2009 had a beautiful baby boy. The parents of this baby boy are as happy as any family would be. Years of working, both parents supporting their family, making sacrifices to make life a little better, having days out, holidays, celebrating birthdays, Christmas etc.. No different than most families. We all have these happy memories, sad times but never expect the devastating life-changing things in life to happen to us.
Imagine, you have been to your doctor and he /she refers you to the local hospital, for what you believed is a lazy eye. After a CT scan, you are referred to Addenbrooke’s Hospital in Cambridge by Ambulance. On arrival to the hospital, you have been admitted into a ward, the first major thing is to have an MRI scan, after waiting 2-3 days for the results you find that it is not a lazy eye, you have a very rare brain tumour.
I hope that nobody has to ever have to imagine or live with this diagnoses, it's not you that has this aggressive incurable form of Cancer. It is your Son or daughter.
What you have just read is what happened to our family, we were confronted with this few weeks ago about our 9-year-old son.
What is this Rare Cancer?
What is this rare form of cancer (Diffuse intrinsic pontine glioma) is a brain tumour found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.
This type of cancer affects children almost exclusively. Approximately 20-40 children in the United Kingdom are diagnosed with this cancer each year. These children are typically between the ages of 4 and 12. This cancer accounts for roughly 10-15% of all brain tumours in children.
This aggressive tumour that interferes with all bodily functions, depriving a child of the ability to move, to communicate, and even to eat and drink.
As the tumour begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with this cancer commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. They also have problems with walking, coordination, speech, chewing, and swallowing. As the tumour progresses, it also interferes with breathing and heartbeat.
A justgiving page was set up dedicated to fund the initial treatment through Funding Neuro which has now been reached. This crowdfunding page has now been set up to fund further treatment he will need, and also to support Charlie during the tough times ahead.
I want to thank Team Charlie Stephenson for all of your hard work and support, you have shown. As you can all appreciate this is just the beginning of the fight, and the toughest times are yet to come. We need to find further treatment that can help control/defeat this rare type of brain cancer.
Thank you for your kindness, love and support to keep us as a family,
Tony, Soeli and Charlie
Please donate to their JustGiving Crowdfunding Page:
Thanks for your support