Do you ever wonder why some people seem to have it all together in the most challenging of situations, and yet you watch on thinking that you would never cope? As a mum of four I, like most parents, tackle challenging situations on a daily basis, juggling the needs of my children while running a business supporting other parents in their physical and mental health, Parent Sanctuary. But this is not the only challenge I deal with. Just over a year ago we received a diagnosis that one of our children, Hero*, has Duchenne muscular dystrophy (DMD).
Duchenne muscular dystrophy
Receiving a diagnosis of the genetic condition Duchenne muscular dystrophy was devastating for the family, as you would expect. This will bring great physical, mental and financial challenges during Hero’s lifetime. But we’re determined to make his life, and living with the condition, a positive for him, for the family and for other boys and families living with the massive impact Duchenne muscular dystrophy has.
One in 3,500-5,000 male births is affected by Duchenne’s. There is no cure; it is 100% fatal. On average boys will die in their 20s. It is caused by a 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 have to make the most of it.
Currently the impact the condition has is minimal – Hero has delayed speech, a waddling gait and falls frequently. There are other challenges because of his fatigue and his distress at not being able to keep up with his twin, and he frequently gets bumps to his head as his hands don’t come up quick enough to save his face. But on the whole he is a happy, normal three-year-old.
This will change.
Before he has finished high school, he will be in a wheelchair full time.
Fundraising and raising awareness of Duchenne muscular dystrophy
As a family we want to raise awareness and money to help find a cure for DMD. To help find a medicine that will allow Hero’s body to generate dystrophin. To help find ways to help boys with DMD live longer. We are also acutely aware that he will need modifications and adaptions to the home and whilst the Disabled Facilities Grant will help towards some of the much-needed adaptions, we know we will need much more.
Adapting our current home will be possible, but externally access is difficult with a pram, let alone a wheelchair. If these issues can’t be resolved, this may mean moving home. So we’ve set up a family fund through Muscular Dystrophy UK. This fund will take 80% of any donations to find a cure for DMD and save 20% for the family for future needs.
But while fundraising is important, I really want to give back, to share some of my training in health and wellbeing, and as a transformational coach, to help others to know that they can overcome challenges too. Life can be fun, and you can have calm and confidence even when facing the stresses of life’s challenges.
Charity event for Hero
We have therefore planned a fundraising day on Bank Holiday Monday, 1 May, at Bagden Hall near Huddersfield. You can learn how to overcome difficulties using nature-based mindset, fitness techniques and ice-bath challenge, in this exclusive one-day event, supported by the HD8 Network. Tickets are from £65 and include lunch.
Graham, founder of The Resilient Lifestyle company, has agreed to donate his time to bring his Fitness4x4® – a unique combination of yoga, pilates, aerobics and resistance training – to help support the day and give participants a full body work out, strengthening the core, improving flexibility and increasing cardiovascular endurance.
I will lead the day with inspirational and educational learning opportunities, mindfulness and meditation and an ultimate challenge of an ice bath, which of course is completely optional! But also totally invigorating and could be beneficial for people with pain or emotional difficulties.
Join me for the launch of my son’s charity, Hero’s Fight Against DMD, and enjoy a day of mindset and motivation, and if you’re feeling brave enough… dip in an ice-bath. More details available here.
If you can’t make this day, why not enquire about sky dives and other challenges – simply send me a message to Rachel@Parentsantuary.co.uk and subject HERO.
*Hero is three years old and has a twin brother, Apollo. They have two older siblings – Thor (aged eight) and Artemis (aged six). These are all stage names, to preserve their privacy as they grow.
