It was in the same month that the family had moved and it was an enormous amount to take on at one time.
Harry was quite late to be diagnosed – at six years old.
Samantha said:
When we were first given the news it felt like everything around us was crumbling and we were falling into a black hole. The hopes for Harry and our family came crashing down and our dreams were replaced with despair, worry and pain.
The family decided they had a choice and that instead of letting Duchenne destroy us they would pull themselves back up and fight…
We have three beautiful children who need and rely on us and if thought that if we crumbled, where would it leave them?
We chose not to let Duchenne define Harry or our family but instead to raise funds and awareness and join the fight to put an end to this cruel disease.
Samantha had never done any fundraising and there was no chance of starting it through planning events during lockdown, so she shared the story through her Facebook page and those of friends.
We must have very generous friends because so far we have raised an amazing £2,000. We were amazed to see £500 come in during the first five hours.
Harry is such a happy little boy who always has a smile on his face. He is very caring, funny and clever. We live in Westhoughton, Greater Manchester, with Harry’s dad Daniel, two sisters Lilly and Evie, and dog Bella. Harry loves cars and dinosaurs and loves going fishing with his dad.
The first few months went by in a blur, we cried more than we ever thought possible but we have now dried our tears and picked ourselves up. We know we have to fight this for our brave little man. Harry started steroid treatment over the last five months and the medication has given him more energy. He is now got much quicker going up stairs!
Samantha said Harry has never complained about the changes he has had to go though.
Throughout the appointments and blood tests he has remained the happy little boy we all know and love. He has continued going to school through the second lockdown because he likes the routine. There have been no cases in his bubble, which is really lucky.
I gave up my work with a construction company as soon as we had the diagnosis because I need to be here for my family. We have also started a go fund me page for Harry and also to raise funds for Muscular Dystrophy UK.
We are doing this in the hope that a cure can be found. From the day Harry was born he stole our hearts and we will not let Duchenne Muscular Dystrophy steal him.
You can support Harry on his Go Fund Me link.