School News 

TERM 3 WEEK 4

Duchenne Muscular Dystrophy (DMD)

In 2022, Dominic a Year 4 student at LNPS was diagnosed with the little-known condition DMD. 

 

There is no cure for DMD. It is a rare condition, affecting approximately 1:5000 live male births, and 1:50,000 live female births. It is caused by a mutation on the dystrophin gene, the protein that is responsible for muscle growth and repair. 

 

DMD is a rare genetic condition that predominantly affects boys. Generally diagnosed between the ages of 2 to 5, DMD results in the muscles of people who have it weakening as they grow. A child with DMD will find it 30% more difficult to complete the same everyday tasks, such as walking, than a healthy child their age. A person with DMD will need the full-time use of a wheelchair around the age of 10-12. It is a life-limiting condition with most people succumbing to it in their mid-twenties.

 

Now that the initial shock of learning that I’m in the position of outliving one of my children has worn off, I want to do something that will make a difference in the lives of, not just DMD patients, but children who find themselves in a place where they need accessible equipment. 

 

The playgrounds that we used to visit before the diagnosis are very much inaccessible and a child in a wheelchair really has no other option but to watch from the sidelines as their friends get to have all the fun. 

 

We would like to change this!

 

Steve Blucher - Dominic's Dad

 

In September an event called 79 on 7/9 is being held where Steve's raising awareness of  DMD by walking 79km and also hoping to raise the funds to build an inclusive playground at LNPS with the intention of replicating this across many schools, year after year. 

 

By walking 79 kilometres  Steve hopes that he'll be able to start an annual event that will inspire people to learn about this condition and to gain the much-needed funding to build the aforementioned accessible playgrounds.

 

Donations can be made through this link

 

Steve will also be undertaking a part of his walk at the LNPS Sports Day to continue to raise awareness.

 

DMD Gala Ball

On the 7th of September,  a Gala Ball to honour World Duchenne Awareness Day, and in support of Steve, who will be walking 79km to raise awareness of Duchenne muscular dystrophy (DMD).

 

The event will be a fundraiser, with proceeds going towards the inclusive playground at LNPS.

 

This event and cause is something the LNPS community is very passionate about and close to our hearts.

 

We would love to see as many people there as possible.

 

To purchase tickets please see the link below:

https://events.humanitix.com/dmd-gala-ballBACKGROUND: