Help 4 Hugo
Hugo Hart is a typical 4 year old boy from Lincoln. Hugo has two brothers, Riley who is 5 and Jasper who is 2. Both myself and my husband, Hugo's Mummy and Daddy, work full time as teaching assistants in order to provide for the family. As working parents raising 3 young boys, life is very challenging. Hugo attends Hartsholme Academy in Lincoln with his brothers, and he absolutely loves school. He loves his puzzles and books and playing with his friends, like any other child.
On the 6th June 2016, we were given devastating news about Hugo, which will affect our entire family forever. Hugo was diagnosed with Duchenne Muscular Dystrophy. After being led to believe that Hugo had Hypermobility Syndrome for several months, this was an unexpected shock, one which has crushed our family, and has affected everyone who knows him. Hugo is a very happy, kind hearted, lovable character. Everyone who meets Hugo falls in love with his beautiful personality.
Duchenne Muscular Dystrophy (DMD) is an incurable, muscle-wasting disease. It is caused by the lack of a protein called dystrophin. There are only 2500 boys in the UK with this condition. It is a serious condition which causes progressive muscle weakness. Children with DMD have difficulty walking, running, jumping, standing up and climbing stairs. They also have difficulty communicating and usually have learning difficulties. By the age of 8-10, boys with DMD are wheelchair bound as the condition develops and they lose the ability to walk. By their mid-teens, DMD sufferers develop cardiomyopathy, which affects the heart muscles. By their late teens, they will start to have breathing difficulties. Once the heart and respiratory muscles are damaged, DMD becomes life threatening. People with DMD die in their early 20s from heart or respiratory failure. It is a genetic condition so Hugo was born this way. Unfortunately his condition has been missed by various health professionals for a long time and we have only discovered he has this hideous condition at the age of 4 years old.
There is no cure for this condition, and the later stages are a truly terrible time. Currently, Hugo has begun the deterioration process. He is already losing the strength in his legs. He already displays a strong Gowers Sign (having to 'walk' his hands up his legs in order to stand up) and is struggling with everyday mobility.
Hugo's paediatrician has said that his maximum life expectancy would be 25. He will be wheelchair dependent by the age of 10, if not sooner.
As a family, this is absolutely heartbreaking. We, as parents, want to ensure Hugo has the best quality of life and is able to enjoy his time with us. We want to create amazing memories for him, and his brothers. Hugo is very close to his brothers and the impact that this will have on them is huge. As a family on relatively low incomes, and 3 children to support, we are hoping to raise funds to use on providing Hugo with life experiences that he can enjoy with his family.
We would appreciate any kind of donation to go towards providing Hugo with the life he deserves. As a family, we have a very difficult journey ahead, but our focus as parents is to make his short life the very best it can be. There are also emerging new treatments available in America and Europe which would not be funded through the NHS so we are hoping to raise funds towards this. We will do all it takes to increase the quality of life for our beautiful boy.
Katie, Danny, Hugo, Riley and Jasper xxxxxx
UPDATE: On Friday 30th September, Hugo was also diagnosed with Autism.
Thank you to each and every one of you who has helped us reach an amazing £17000 in less than 8 months!
Lots of LOVE to you all, especially this gorgeous little dude!!
This will be easy peasy for Riley and Jasper but Hugo may find this a challenge! However, he is always determined to keep up with his brothers, who never leave him behind, and I'm sure they will all enjoy every single second!
We will of course have Hugo's wheelchair with us for when he gets tired but knowing Hugo, he will blast through it in his own time, especially if there is a shiny medal waiting for him at the end!
We are of course doing this to raise money for Hugo's fund, but this time we are splitting the total with the Wish Upon A Star charity. They sent us on our amazing Santa Express trip last Christmas, and this is the charity who we will eventually be applying to go to Disney World with! They do amazing things for children like Hugo but those wishes only happen because of the funds they receive through donations.
So, please sponsor the boys as much or as little as you can possibly spare, to help towards making Hugo's (and other children's) dreams come true.
Sponsors can be made by commenting on here, Hugo's page or message me/Danny directly (for sponsors to be paid after the event). Alternatively, donations can be made via Hugo's gofundme account www.gofundme.com/Hugohart or via cash/cheque/bank transfer if you are happy to donate prior to the event (if using gofundme please leave a note stating it is for the 1.5k mini run).
After the event, we will total the sponsors and donations and split with Wish Upon A Star.
I worked with Danny at last school I was in the canteen, our son jack has cancer so I completely understand the devastation news like this brings, keep your chin up guys and look forward to the nice things that happen occasionally, make special memories and keep trying to smile even when it all looks bleak xxx