Help to keep Cal cruising!

Keep Cal Cruising

Hi, I'm Gemma and my husband is Leigh, we have set this page up for our eldest son Cal who is 9 years old and lives with Duchenne Muscular Dystrophy (DMD).

What is Duchenne Muscular Dystrophy?

DMD is a severe degenerative muscle wasting disease. 1 in every 3,500 boys are born with Duchenne, and 1 in every 50 million girls are born with Duchenne. It is mostly a genetic disorder, but 30% of boys born are due to a random mutation. I am not a genetic carrier and have no family history so our diagnosis came completely out of the blue. Duchenne can affect any boy or any family. It is caused by a mutation which prevents the body from producing a protein called Dystrophin. Dystrophin acts like a shock absorber when muscles contract. Without Dystrophin, muscles become damaged and weak.

Duchenne is usually diagnosed between the ages of 4 to 6yrs. Muscle weakness becomes more evident around the age of 4. Muscle loss occurs first in the thighs, legs, pelvis followed by upper body loss. Duchenne is 100% fatal, usually from lung or heart failure. There is a shortened life expectancy (mid to late twenties).

Currently, there is No Cure.

Our story:

When Cal was born it changed our lives forever, he was the most perfect little baby anyone could have wished for. For the first few years of his life everything was wonderful however it was noticed that Cal wasn’t meeting the general milestone for a child his age. We were referred to our local hospital and, after a simple blood test just after his 3rd birthday we were told he had Duchenne Muscular Dystrophy. This news came as a devastating shock to our whole family. To us, our son was a happy, healthy little boy who was just our world, how could this be possible?! How unfair this world seemed. To be told he had an incurable, life-limiting condition was beyond heartbreaking. The weeks after his diagnosis were a blur of grief and sadness but we knew we had to move on from that and learn to live our life the best way we could and for us, this meant focussing on giving Cal the best possible chances we could. As a parent your instinct is to protect and nurture your child, it seems to go against nature to have to watch your child progressively get weaker instead of stronger and as a mum you would do anything to make your child's life a little easier, a little better and take a small victory back over this savage disease.

Cal has now already lost his ability to stand and walk, which, if you can imagine for a 9 year old, must be extremely difficult to come to terms with. However Cal has been amazing, he smiles and laughs and has a zest for life and adventure just like all his friends. Our mission as his Mum and Dad is to fill Cal’s life with happy memories and live each day to the fullest.

Cal lives with us, his younger brother Taylor and our dog Luna whom he adores. We often take day trips to the seaside where, now he is restricted to the paths and pavements nearby where his current wheelchair can go. We can only watch on with a lump in our throats as he sees his brother playing in the sand and in the sea knowing all too well that all he wants to do is join in.

We hope to raise enough funding to purchase Cal a Trekenetic GTE all-terrain wheelchair. This amazing wheelchair really has no limits and would mean where the pavement stops, Cal can keep going! This would open up so many possibilities for Cal and bring him the independence he deserves.

The Trekinetic GTE (pictured below) would change his entire world. The chair however comes in at around £13.5k once adaptions have been made to make it suitable for him. We already have the kind support of two charities who have generously donated towards the cost but now need to raise the remaining balance.

We are so close and hope with all our hearts that with your help we can make Cal’s dream of owning one come true.

Should we be lucky enough to raise funds above our target, these will be put toward other equipment such as a hoist so Cal can access our Hot Tub for hydrotherapy.

Having a child with a life-limiting condition has taught me to look at the world differently, I learn things from both our wonderful boys each day. They remind us that you can love that little bit deeper, be kinder and really let nothing stand in your way. Thank you so much for taking the time to read this and thank you so much for any donation big or small xx