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Personal stories

A message for newly diagnosed families

Dear Parents & Friends,

If you’re reading this, the chances are that either your child, or a child close to you, has been diagnosed with Duchenne muscular dystrophy.

Both of us, our sons and our families, have lived with this disease since 2011. It has caused us unspeakable pain and, at times, nearly broken us. But it has also united us. And it has made us strong. And it has made us fight for our sons in ways we never thought possible. And yes, we are able to smile, and laugh, and enjoy life with our children. And, in time, you will too.

Diagnosis can be an emotionally devastating time. A time when the hopes, dreams and plans that you had for your child and your family, now seem to have no place. Instead, you’re faced with a new reality of grief, despair, loneliness, a feeling of losing control, a deep sadness for your child and the end of a carefree life.

But the more you learn about DMD, the more you will hear about a global army of doctors, scientists, researchers and drug developers who are absolutely committed to fighting this disease for all our children.

There are many reasons for optimism now. Promising new therapies are being tested. Many more are being developed.

Right now, it’s probably difficult for you to think past your child’s diagnosis. We know how hard it is to get this news.

So, we want to help you cope with the diagnosis and plan your child’s care. We’ve worked with DMD parents to create a set of resources for you here.

If you would like to speak with us, please send an email to [email protected]. We’ll arrange a time for us to meet or talk on the telephone.

We believe in the strength of communities like ours to move mountains. And in the power of science and medicine to change lives.

Together, we can change the future for everyone living with Duchenne muscular dystrophy.

 

Emily Reuben & Alex Johnson

Founders of Duchenne UK

Published on 27 May 2018

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“You will feel total desolation but things will get much much better. You will find your new normal and happiness will return. Duchenne will make you stronger than you ever know. You are not alone - there is an army of parents and doctors and scientists out there whose life mission is to cure this disease, and we move ever closer.’

“Be brave. Get referred, if possible, to a neuromuscular centre that is involved in research. Go to conferences and workshops and meet up with other families. Join a charity like Duchenne UK and get involved in fundraising.’

“Live for today, try not to look too far into the future. Have hope, there are many amazing parents and clinicians you can speak to who are working very hard to find a treatment. Come along to Duchenne UK's Parent Information Days. You are not alone.’

“Don’t overwhelm yourself with too much information straight away, just focus on getting through the next few days and weeks rather than racing ahead to what the future may hold as there is lots of hope and the future will likely be very different for your child.’

“The key thing is that there is hope, and that it is important to get in front of the right people who can give accurate advice about the condition and how to look after your child.’

“In my experience, the past 8 years have been incredibly joyful – lots of fabulous memories made. You will all get
through the initial diagnosis and will get on with your lives again. There is a great life after the initial diagnosis. Believe it, because it is so true.’