Action4Harry
Donation protected
In March this year, as the country went into lockdown, our world as we knew it was torn apart when our son Harry was diagnosed with Duchenne Muscular Dystrophy (DMD). Harry is six years old. He is such a happy little boy who always has a smile on his gorgeous little face. He is very caring, funny, clever and loves cars, dinosaurs and going fishing with his Dad.
He lives in Westhoughton with myself (his mum Samantha) his dad Daniel, his two sisters Lilly and Evie and our dog Bella. When we were first given the diagnosis 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 as our dreams where replaced with despair, worry and pain. We thought that we would never be happy or find joy in life again. The first few months went by in a blur.
We cried more than we ever thought possible and felt heartache like never before. But we have now dried our tears as we know we have to fight this disease for our brave little man. We had a choice. We could let Duchenne destroy us or we could pull ourselves back up and begin to fight against this.
We have three beautiful children who need and rely on us and if we crumbled where would that leave them? So instead we decided to be strong together as a family. Fighting through our darkest moments, we chose to be strong and 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.
Harry started steroid treatment over 3 months ago and has never complained once about the changes he has had to go though and throughout all of the doctors appointments and blood tests, he has remained the happiest little boy we all know and love with his cheeky little smile that lights up the room.
We want to raise as much money as possible for Muscular Dystrophy UK who support high quality research with the aim to find treatments and cures for DMD and also hope to raise funds for aid, equipment & care that Harry will need. We are doing this with real hope that a cure can be found because losing Harry is not an option. From the day he was born he stole our heats and we will not let Duchenne Muscular Dystrophy steal him from us.
Duchenne Muscular Dystrophy (DMD) is a genetic disease that causes muscle weakness and wasting. Children born with DMD have a fault, known as a mutation, on their dystrophin gene. Genes are smaller sections of your bodies DNA. They are the instructions that make our bodies work. For people with DMD, the fault on the gene means that they cannot produce dystrophin, which is a protein that protects muscles. Without dystrophin, muscles get damaged more easily and so muscle strength and function is weakened. DMD almost always affects boys and they tend to be diagnosed before the age of 5. There are around 2,500 patients in the UK and an estimated 300,000 worldwide. It is classified as a rare disease. By donating you will really help make a difference to our lives and we would like to thank you in advance.
He lives in Westhoughton with myself (his mum Samantha) his dad Daniel, his two sisters Lilly and Evie and our dog Bella. When we were first given the diagnosis 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 as our dreams where replaced with despair, worry and pain. We thought that we would never be happy or find joy in life again. The first few months went by in a blur.
We cried more than we ever thought possible and felt heartache like never before. But we have now dried our tears as we know we have to fight this disease for our brave little man. We had a choice. We could let Duchenne destroy us or we could pull ourselves back up and begin to fight against this.
We have three beautiful children who need and rely on us and if we crumbled where would that leave them? So instead we decided to be strong together as a family. Fighting through our darkest moments, we chose to be strong and 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.
Harry started steroid treatment over 3 months ago and has never complained once about the changes he has had to go though and throughout all of the doctors appointments and blood tests, he has remained the happiest little boy we all know and love with his cheeky little smile that lights up the room.
We want to raise as much money as possible for Muscular Dystrophy UK who support high quality research with the aim to find treatments and cures for DMD and also hope to raise funds for aid, equipment & care that Harry will need. We are doing this with real hope that a cure can be found because losing Harry is not an option. From the day he was born he stole our heats and we will not let Duchenne Muscular Dystrophy steal him from us.
Duchenne Muscular Dystrophy (DMD) is a genetic disease that causes muscle weakness and wasting. Children born with DMD have a fault, known as a mutation, on their dystrophin gene. Genes are smaller sections of your bodies DNA. They are the instructions that make our bodies work. For people with DMD, the fault on the gene means that they cannot produce dystrophin, which is a protein that protects muscles. Without dystrophin, muscles get damaged more easily and so muscle strength and function is weakened. DMD almost always affects boys and they tend to be diagnosed before the age of 5. There are around 2,500 patients in the UK and an estimated 300,000 worldwide. It is classified as a rare disease. By donating you will really help make a difference to our lives and we would like to thank you in advance.
Organizer
Samantha Ballegher
Organizer