The Kasners Kick Duchenne
Have you heard of Duchenne?
Recently I was introduced to a very special family, The Kasners. The family consists of Sarah and Dan and their two little boys Caleb (4) and Duncan (3). These two little boys can run, jump and climb. But it won’t always be this way. You see, Sarah and Dan just learnt back in March 2018 that Caleb has Duchenne Muscular Dystrophy.
Duchenne is the #1 genetic killer of children worldwide.
It rare genetic disease that typically only manifests in boys.
Kids with Duchenne are missing the ability to produce dystrophin. Our muscles need dystrophin for strength and function. Every muscle starts to deteriorate, including the heart and lungs.
A typical prognosis is:
- Wheelchair bound between 10-12 years old.
- Average life expectancy is late teens or early 20’s
Even worse, there second little boy Duncan (3) was just diagnosed with Duchenne Muscular Dystrophy in May 2018.
It is beyond devastating and I can’t even imagine how I would handle hearing news like this. I’ve only just met Sarah and Dan but I already know they are amazing people who are so selfless and always asking how everyone else is. No matter what they are feeling on the inside, they have a smile on their face for their boys and are letting them be boys and enjoy life.
They are also being incredibly proactive and going to conferences, networking, meeting doctors, continually learning and fundraising. They are doing everything they can to beat this prognosis.
The good news is there is still hope for the boys.
Scientists are on the cusp of breakthroughs for Duchenne and drug companies are dedicating resources to Duchenne.
The Duchenne Landscape is changing and you can help!
I am hosting an online Beautycounter event on Friday August 10 on FB where I will be sharing more information about this beautiful family and this horrible disease.
100% of my commission will be going to help find a cure for Duchenne.
Please contact me at firstname.lastname@example.org or comment below if you would like an invitation!