Aconveyancing Charity Partner Alex’s Wish - Fighting Against Duchenne

Alex’s Wish aims to help conquer Duchenne Muscular Dystrophy and save thousands of lives. 

Duchenne Muscular Dystrophy is a genetic disease that causes aggressive muscle weakness and wastage affecting 1 in every 3,500 boys born, including Alex. Currently, there is no cure and no treatments to slow down muscle wasting.

Every single week, two families will receive the same devastating news as Emma and Andy Hallam – parents to Alex (now 15 years old) that their child has Duchenne. Having learnt that not enough funding is going into conquering Duchenne, Emma and Andy set up Alex’s Wish back in late 2012 with a mission to eradicate Duchenne. Read more about Alex’s story.

Funding research is the beating heart of Alex’s Wish, we offer real and tangible hope where there hasn’t been any before. We push passionately for treatments for this generation of children and we only ever invest in the best science from around the world that will help bring effective e treatments and ultimately a cure for this generation of children.

Over the next six months, we will be supporting this charity to raise vital funds. In support of this amazing cause, we will be asking clients whether they would like to make an optional £5 donation to our charity partner as part of their conveyancing service, which Aconveyancing will match with another £5.

Our fantastic team also has a few events planned that will be shared with everyone nearer the time.

Duchenne is a genetic disease that causes muscle weakness and wasting. Children born with Duchenne have a fault known as a mutation, in their dystrophin gene which 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 are weakened.

Often the earliest indication that a child may have Duchenne is their difficulty in getting up from the floor, walking or running. Gradually, the child’s other muscles will begin to weaken as well. Without dystrophin, muscles become inflamed over time. As the muscles try to repair themselves, fatty and fibrous material builds up in the muscle and causes them to stop working altogether. This is called fibrosis and causes the muscles to become rigid and hard.

Advances in research and knowledge of the disease are increasing life expectancy. Now, more and more young adults with Duchenne lead full lives – going to university, having relationships and living independently. However, men and women with Duchenne do have a reduced life expectancy.

Duchenne is a life-changer, it affects every single day of your life as you must be prepared for ever-changing challenges that affect your child’s day to day activities. 

Duchenne is a progressive, muscle-wasting disease – it is relentless – affecting every single muscle in the body. One day your child may not be able to walk, may not be able to lift a cup to their mouth, may not be able to play around at their friend’s house anymore. 

It is overwhelming at times and affects how you live your life at every level. It affects siblings too as often parents will spend much of their time caring for their child with Duchenne. It requires a multi-disciplinary medical team to support their ever-changing needs. It’s incredibly stressful for the families affected as they live in fear of the next stage of progression and wonder how they are going to cope.

It leaves those with it in a wheelchair by around the ages of 8-12. Muscle strength continues to decline affecting the arms, neck and torso by teens. The average age boys live to is just mid 20’s mainly due to heart and respiratory complications.

• 1 of the most serious genetic diseases in children
• 100% fatal
• 1 in every 3,500 boys born will have Duchenne
• 2,500 boys affected in the UK
• 300,000 boys affected worldwide
• 2 families per week receive a diagnosis in the UK
• 90% of boys will be wheelchairs by the age of 12
• 1% is the number of girls affected
• 25 is the average age boys will die
• No treatments to help all mutations and no cure

If Alex’s story has touched your heart you can still donate, even if you’re not a current client of Aconveyancing. You are able to support in many different ways these include monetary donations: 

Make a one-off donation: https://app.etapestry.com/onlineforms/AlexsWish/donate.html 

Register for regular giving 'Be More Alex' campaign (£7 per month): https://alexswish.co.uk/bemorealex/

Other ways to support this charity involve spreading the word or choosing Alex’s Wish in any future fundraisers.