Do you ever wonder why some people stick together in the most difficult situations, but you look at the idea that you won’t make it? As a mother of four, I, like most parents, deal with difficult situations every day, looking out for my children’s needs while on the go. a business that supports other parents in their physical and mental health. Holy Father. But this is not the only problem I have to deal with. About a year ago we were diagnosed with Duchenne muscular dystrophy (DMD) in one of our children, Hero*.
Duchenne muscular dystrophy
Having a diagnosis of the genetic form of Duchenne muscular dystrophy is devastating for the family, as you can imagine. This will bring physical, mental and financial problems during Hero’s life. But we are determined to make his life, and living with the condition, better for him, for the family and for the boys and other families living with the severe effects of Duchenne muscular dystrophy.
One in 3,500-5,000 male births are affected by Duchenne’s. There is nothing to live for; it is 100% dead. On average, boys die in their 20s. This is due to the lack of dystrophin that helps muscles grow and develop normally. Girls can be carriers and 1% of girls with the gene are symptomatic.
When time is short, you need to make the most of it.
Now the situation has little effect – Hero has a speech delay, walks and falls frequently. There are other problems due to his fatigue and pain in not being able to keep up with his twin, and he often gets injuries on his head because his hands don’t go up to save his face. But on the whole it’s a happy, usually three-year period.
This is about to change.
By the time he graduated high school, he would be in a wheelchair full time.
Raising money and raising awareness of Duchenne muscular dystrophy
As a family we want to raise awareness and money to help find a cure for DMD. Help find a drug that will allow Hero’s body to produce dystrophin. To help find ways to help boys with DMD live longer. We know very well that he will need adaptations and modifications at home and while the Disabled Facilities Grant will help with some of the most needed adaptations, we know we need more.
It is possible to change our home now, but it is difficult to get in and out with a wheelchair, let alone a wheelchair. If these issues cannot be resolved, it may mean moving home. So we set up a family fund through Muscular Dystrophy UK. This fund will take 80% of donations to find a cure for DMD and keep 20% for the family for future needs.
But while fundraising is important, I also want to give back, share some of my health and wellness learning, and as a change agent, help others to know that they can overcome difficulties. Life can be fun, and you can find calmness and confidence while facing the challenges of life’s challenges.
A romantic event for Hero
So we have planned a fundraising day on Bank Holiday Monday, 1st May, at Bagden Hall near Huddersfield. You can learn how to overcome problems using natural thinking, exercise techniques and ice bathing, in this unique one-day event, sponsored by the HD8 Network. Tickets from £65 and include lunch.
Graham, founder of The Resilient Lifestyle Group, has agreed to volunteer his time to bring his Fitness4x4® – a unique combination of yoga, pilates, aerobics and resistance training – to help supporting the day and providing participants with total physical activity, strengthening the core, improving flexibility and increasing cardiovascular endurance.
I will lead the day with moments of learning, meditation and meditation and a final challenge of ice bathing, which is the most optional! But it is very effective and can help people with pain or emotional problems.
Join me for the launch of my son’s charity, Hero’s Fight Against DMD, and enjoy a day of creativity and inspiration, and if you’re feeling brave… take part in the ice bath. More details are available here.
If you can’t make it today, why not ask about skydiving and other issues – just send me a message [email protected] and the HERO theme.
*Hero is three years old and has a twin, Apollo. They have two older brothers – Thor (eight years old) and Artemis (six years old). These are domain names, keep their privacy as they grow.