Duchenne and our child - a personal experience

We are one of many families living with Duchenne muscular dystrophy. My aim in creating this, is to raise awareness.We need to raise the profile of Duchenne in Australia. This is a devastating terminal disease.
Views expressed in this story are my own individual views and are not necessarily the views of PPA
For more information go to the Parent Project Australia (PPA) website: www.parentproject.org.au
Support us, support our boys, help make a difference.
Parent Project Australia has been "re-branded". Look for the new DUCHENNE FOUNDATION. The new website - www.duchennefoundation.org.au will be up soon.....in the meantime that link will default to the Parent Project Australia website.

Category:

People & Blogs

Tags:

• duchenne
• muscular
• dystrophy
• DMD
• support
• parent
• project
• australia
• PPA
• PPMD
• muscle
• wasting
• wheelchair
• disability
• foundation

[littleblakduk]

Many thanks to all of you for your kind words and support. You can also show your support by going to the Parent Project Australia website and signing the E-Petition. The web addresses are listed under the "more info" heading on the top right corner of this page. Thanks again!

[robmayben]

Great video. I am a high school teacher who works with students with all types of abilities. Over the past several years I have worked to develop a device to help my students stay independent in my classroom. Last month Fox News in California did a story about David, who also has Duchenne Muscular Dystrophy and my device the desktop desk. The story is on YouTube, desktop desk and David.

[ShinaSouza]

Sou portador de Distrofia Muscular de Cinturas. Continuo crendo no Poder e Promessas do Senhor nosso Deus, pois Ele não é homem para que minta e nem filho do homem para que se arrependa. Ele é o Único Médico que jamais nos desengana, creia Nele de todo o vosso coração e erás o Grande Milagre acontecer, ainda que tudo vos mostre o contrário; Deus é Maior! Abraços e fiquem na Paz do Senhor Jesus Cristo!

jamais desistam de seus sonhos!

Jesus ama todos vós; Deus vos abençoe!

[alexfo7o]

This is a very devastating disease. my GF has acousin has this or BMD both r not good. I am really sorry!

[toberget]

Hi i know how it is...I have 2 sons vhit DMD. Niclas 23 years and Richard 27 year. The angel call Richards name june 10 2008. He died in his sleep and left us I miss him so. Hugs from Carla u sister i pain.

[kazzah27]

Hi,your story is so touching i also have a son who is 8 this year with the same condition its such a horrible thing to live with my heart goes out to your family and yes lets hope and pray for a cure for this killer disease.....

[naomiimoan87]

Your story is very touching, I am at college studing NC childcare so that I can do HNC the following year, part of my work was to right about te disease Duchenne MD, I had no idea how serious the condition was until I listend to your story! It is very touching and very sad. I hope all the best comes to you, you are not alone in this fight you have helped others understand the disease a bit better so that some day we WILL find a cure!

Take care Naomi, UK

xx

[SecretYoungLink007]

i also got duchenne and im 16 now

[1959catty]

My prayers are certainly with you. Listening to your story was as if I was listening to my own son's story. AJ lost his fight on February 5, 2008. The poem you read was printed on the program for his memorial service. I pray there is a cure very soon. We are losing too may of our children to this horrible disease.