• Challenge 79 for World Duchenne Awareness Day
  • About Us
    • Our vision
    • Our Strategy
    • What we do
    • Our Impact
    • Our team
    • Work For Us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Mental Health Awareness Week 2025
    • Science on Tour
    • Support Calendar – What’s On
    • Support for you and your family
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • Connect with others
    • Support for 8-14 yrs ‘Turning Point’
    • Support for 14-25 yrs ‘Yes I Can’
    • Schools
    • Siblings
    • End of Life and Bereavement
  • AD Annual International Conference
    • SAVE THE DATE for the Action Duchenne Annual International Conference 2025
    • Highlights from the Annual Action Duchenne Annual International 2024
    • Annual International Conference 2023 Video Recordings
    • Annual International Conference 2022 Recordings
      • Adults with Duchenne
      • Growing up with Duchenne
      • The Duchenne Journey
      • What is new in Duchenne research?
  • News, Webinars and Blogs
    • News
    • Webinar Series 2025
      • Webinar Series 2025
      • Webinar recordings
    • Bite-Sized Duchenne Science Live
      • Facts about Duchenne muscular dystrophy
      • Signs and Symptoms of Duchenne Muscular Dystrophy
      • Diagnosis of Duchenne Muscular Dystrophy
      • Crucial Genetic Terminology
      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
    • Blogs
  • Support Us
    • Help Make a Life Beyond Duchenne Possible – Every Month
    • Fundraising Events and Challenges
    • Take on a challenge for Duchenne
    • Shop
  •  0 items - Free
  • Menu
  • Skip to right header navigation
  • Skip to main content
  • Skip to secondary navigation
  • Skip to primary sidebar
  • Skip to footer

Before Header

  • BECOME A MEMBER
  • SHOP
  • My account
  •  0 items - Free

Action Duchenne

Header Right

  • Challenge 79 for World Duchenne Awareness Day
  • About Us
    • Our vision
    • Our Strategy
    • What we do
    • Our Impact
    • Our team
    • Work For Us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Mental Health Awareness Week 2025
    • Science on Tour
    • Support Calendar – What’s On
    • Support for you and your family
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • Connect with others
    • Support for 8-14 yrs ‘Turning Point’
    • Support for 14-25 yrs ‘Yes I Can’
    • Schools
    • Siblings
    • End of Life and Bereavement
  • AD Annual International Conference
    • SAVE THE DATE for the Action Duchenne Annual International Conference 2025
    • Highlights from the Annual Action Duchenne Annual International 2024
    • Annual International Conference 2023 Video Recordings
    • Annual International Conference 2022 Recordings
      • Adults with Duchenne
      • Growing up with Duchenne
      • The Duchenne Journey
      • What is new in Duchenne research?
  • News, Webinars and Blogs
    • News
    • Webinar Series 2025
      • Webinar Series 2025
      • Webinar recordings
    • Bite-Sized Duchenne Science Live
      • Facts about Duchenne muscular dystrophy
      • Signs and Symptoms of Duchenne Muscular Dystrophy
      • Diagnosis of Duchenne Muscular Dystrophy
      • Crucial Genetic Terminology
      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
    • Blogs
  • Support Us
    • Help Make a Life Beyond Duchenne Possible – Every Month
    • Fundraising Events and Challenges
    • Take on a challenge for Duchenne
    • Shop
The Ker-Lindsay's - Family Story

The Ker-Lindsay’s – Family Story

You are here: Home / Stories / The Ker-Lindsay’s – Family Story

April 26, 2019 by

Our son, John, was diagnosed with Duchenne Muscular Dystrophy in October 2014, soon after his fourth birthday.

John’s diagnosis process

Almost from the day he was born, we knew that there was something ‘wrong’. It was just a sense we had. As he grew, he was always behind on his development. However, we were repeatedly told that everything was fine. We therefore just put his slow progress to being worried parents. Nevertheless, the concerns persisted. In the end, we managed to get a referral to a wonderful paediatrician. She picked up Duchenne almost immediately. From that point onwards, we have had absolutely brilliant support. We have a great team of specialists here in Kingston, including an amazing school, and John is under the care of Great Ormond Street.

The Ker-Lindsay's - Family Story

First few months

A diagnosis of Duchenne is absolutely devastating, and completely overwhelming. The first three or four months were the absolute worst of our lives. However, and most parents will say the same, it does get better. There will always be ‘that sadness’, but at some point it ceases to be the only thing you think about and becomes something that instead hovers in the background. John is a lovely, happy, funny little boy. For the moment, we actually have a rather normal home life. Yes, there are the ‘space boots’, the wheelchair and the steroids, but each element just becomes another part of your existence and you adapt to it. He loves his little brother, William, who is unaffected, and together they create havoc whenever they can!

Getting support

Action Duchenne were just brilliant from the first moment we got in touch with them. It was not just the wonderful emotional support of being able to talk to people who really understand what you are facing, it is the practical support we received. They really do have a fantastic wealth of experience. For example, their information on education and learning was invaluable for us as parents, as well as for John’s school. Knowing the problems boys with Duchenne can often face meant that we could anticipate John’s educational needs. As a result, he is thriving at school. While we all desperately want to find a cure for Duchenne, it is vital for families to have support and be able to get accurate information on managing the condition. This is where Action Duchenne stands out. The Action Duchenne conference is a highlight of the year. As well as being a chance to hear about the latest research developments, it is also a great opportunity to pick up practical tips and advice as well as meet up with other parents.

Fundraising

 As for fundraising, we have been trying to come up with some grand ideas, but really the key is not to overthink it too much! Better to get started – even with small, fun things. However, we do give a monthly amount to Action Duchenne, and have encouraged other friends and families to do the same. Regular income is crucial for charities. If you can set something up, and encourage others to do so, this can make a huge difference.

A message to Newly Diagnosed Families

In terms of advice to new diagnosed parents, I will forever be grateful to a friend who has a severely disabled son. As soon as I got the diagnosis, I met up with him. He said whatever you do, never ask the question ‘why us?’. He said he had lost several years to depression because he went down that road. It is not your fault. It happens. Do feel sad, angry, frustrated about the situation. But try to avoid thinking about why it happened to you. Also, it is really important to try to have as normal a home life as possible. Your son is still a child, and will want to be able to enjoy his childhood as much as he can. It may seem as though that can never happen. It will – once you get past the initial shock. You will laugh again, I promise. – James Ker-Lindsay, September 2017

Action Duchenne can help you

  • Frequently asked questions
  • Get support
  • Tell us your story
Share this:

Primary Sidebar

From our community

The Heart of Care

The Heart of Care We have had some key reminders of what we are working towards as a charity over the last few weeks. Volunteer’s Week (2nd – 8th June) was a chance to thank all of the people who give up their time and expertise for Action Duchenne. From the team of trustees, those …

Mental Health Awareness Week: Alex’s Journal

Written By Alex Berbank 15 Minutes a Day I’ve really enjoyed getting into the frame of mind to look at my mental health. Before this week I wasn’t quite sure what to expect. My ideas of what looking at my own mental health would look like weren’t accurate. I thought there would be more softly …

Mental Health Awareness Week: Alex’s Journal

Mental Health Awareness Week Journal, Written by Alex Berbank Watch Alex’s Vlog for Mental Health Awareness Week Thursday’s Update: Meditation and Mindfulness So, to this point this week has been great. I’ve actually taken to the focus on my mental health and self improvement thing quite well and I hope I’ll keep these new ideas …

Footer

Action Duchenne
Wellesley House
Duke of Wellington Avenue Royal Arsenal
London
SE18 6SS

07535 498 506
info@actionduchenne.org 

 

 

 

 

 

 

 

 

Subscribe to our mailing list

Do you consent to receiving regular email updates? *
Email Format
  • Accessibility
  • Privacy Policy
  • Terms & Conditions

© Action Duchenne - Registered Charity No 1101971 - Scottish Charity No SC043852

Like most websites we use cookies to deliver a personalised service. To use the website as intended please accept cookies.
Privacy & Cookies Policy

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Non-necessary
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.
SAVE & ACCEPT