** More events announced soon! **
Thanks for taking the time to visit our JustGiving page. We have decided to run different events during 2015 and beyond to raise funds and awareness to combat the little known disease; Menkes. Our Team Captain, Tommy Burton, passed away in the early hours of April 23rd 2015, following a 13 month battle with Menkes, we continue to raise funds and awareness in his name.
Tommy's fighting spirit inspired many to get involved in the cause for finding a cure for Menkes disease. From starting to run, pushing ourselves further and faster than ever before, to donating or even just sharing a status or a photo, his smiles drove us all to want to be involved, and for that he will never be forgotten. Sleep tight little star, we hope the money raised in your name will go some way to helping ensure no other little fighters have to fall victim to this cruel illness. Love from us all at TeamTommy x
You can read about Tommy in the words of his parent's below...
On the 10th March 2014, I (Kelly) and my partner (Michael) were blessed with the birth of our first child Tommy, he came 4 weeks early.
Everything went well with the birth and within a couple of hours we were transferred to the ward. After a couple of days we were allowed to take Tommy home and start our adventure with him. Only a week had passed when we were admitted to hospital as Tommy had a low temperature and he was also treated for jaundice.
Tommy spent a week in hospital before he was allowed to return home; at last we thought that was the end of our problems. At 6 weeks old we had a massive scare when Tommy stopped breathing at home, thankfully we were given some basic CPR training and we managed to resuscitate him. The ambulance crew arrived and we were back to the hospital and spent another 2 weeks wondering what was wrong. Tommy was diagnosed with Acid Reflux. He was given his medication and it was off home again.
For the next few months things went really well with Tommy meeting all his milestones for a new baby and he was generally a happy and healthy baby.
In early September Tommy again fell ill and was admitted to hospital once again. Lots of tests were run and they found out that he was having seizures. We were immediately transferred to St Thomas (Evelina Children's Hospital) for further tests.
After a few days of being at St Thomas we had some very bad news that Tommy had significant brain damage, which led to the hospital to do yet even more tests. After 2 long anxious weeks we finally got some answers, Tommy was diagnosed with Menkes disease.
Menkes disease is a fatal illness in which the intestines are unable to absorb copper this deprives the brain and other tissue of this essential mineral. We were absolutely devastated and couldn’t believe our little boy was not going to grow to do all the things we had dreamt of him doing.
We give him copper injections daily to help control some of the symptoms as well as a liquid form of medication to control his seizures.
For now all we can do is give Tommy all the love, care, cuddles and support we can. We aim to give him the possible life that our little bundle of joy deserves.
Kelly and Michael
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
Full TeamTommy Team List:
Amanda Bridle, Jon Hume, Michael Burton, Lisa Bloor, Emma, Kiers Mccourt, Ryan Smith, Chloe Burton, Kate Walton, David Wickendon, Nicola Lee, Karina Hesketh, Karen Burd, Kylie Birch, Hannah Burton, Richard Burton, Wayne Robinson, Andy Burton & Watson Hume
21st March 2015 - CTS Sussex Half Marathon (Jon + Watson)
12th April 2015 - BM10k & Brighton Marathon (Amanda, Lisa, Emma, Jon)
25th May 2015 - BUPA 10km, London (Amanda & Jon)
31st May 2015 - Wimbledon Common Half Marathon (Lisa)
6th June 2015 - The Superhuman Games (Kiers & Ryan)
20th June 2015 - Brutal Enduro (Jon, David, Nicola, Kylie, Karina & Karen)
21st June 2015 - Nike Women's 10km London (Amanda, Chloe, Lisa)
4th July 2015 - Olympic Park 10K Summer Series (Amanda, Kate, Jon)
23rd August 2015 - #TeamTommy Fun Run, Crawley (Loads of people!)
27th September 2015 - Hard As Snails 10km (Jon + Watson)
18th October 2015 - Battersea Park 5km / 10km (Amanda, Jon, Hannah, Chloe, Andy, Wayne, Rich, Michael)
7th November 2015 - The Poppy Half Marathon, Bexhill (Amanda & Jon)
6th, 7th & 8th May 2016 - Waterhall Charity Golf Gala - Waterhall Golf Club, Saddlescombe Rd, Brighton, BN1 8YR
21st August 2016 - #TeamTommy Fun Run, Crawley (Loads of people!)