The first few months
As a parent of a newly diagnosed child with Duchenne, you are not alone. Here is our advice on what you can do during the first few months.
First of all, take it one day at a time
Don’t try to learn everything at once, focus on the next few weeks, not years ahead. Remember that treatments and research are reasons for hope.
Here's what you can do
Don’t try to learn everything at once, focus on the next few weeks, not years ahead. Remember that treatments and research are reasons for hope.
Give yourself time. Accept help from family and ask for practical support like meals, shopping, childcare.
Share the diagnosis when you feel ready.
Ask for a referral to a neuromuscular clinic (North Star Centre if possible), and request referrals for physiotherapy, occupational therapy, and social care.
Speak to teachers about simple changes to protect your child’s muscles.
Use trusted sources such as your neuromuscular doctor and avoid unreliable information online.
Answering parents' most common questions
- See a neuromuscular specialist as soon as possible
- Physiotherapy and stretching should start early
- A healthy diet and gentle exercise help protect muscles
- Steroids can slow muscle weakness (your doctor will advise when to start)
- Adapt your home gradually (ramps, handrails, and later, wider doors and lifts)
- Encourage hobbies, friendships, and independence
- Tell them soon after diagnosis
- Use simple, truthful words they can understand
- Focus on what they can do now, not what might happen years ahead
- Reassure them it’s not their fault
- Answer questions honestly (and it’s okay to say you need time to think)
- Involve them in conversations about Duchenne
- Give them time and attention too
- Explain that Duchenne is genetic and not contagious
- Encourage them to talk about their feelings
- Chest infections must be treated quickly with antibiotics and physiotherapy
- If your child needs surgery, tell doctors they have Duchenne
- Certain anaesthetics must never be used (e.g., inhaled anaesthetics, succinylcholine)
- Register for our Duchenne UK Connect app, which allows you to prepare and quickly share key health information in emergency situations
- You may be entitled to Disability Living Allowance, Carer’s Allowance, and other benefits
- Your local authority can provide social care, short breaks, and grants for home adaptations
- Ask for an occupational therapy assessment early – waiting lists can be long
- Children with Duchenne are living longer than ever before
- Many go to university, get jobs, and live independently
- Research is moving fast – new treatments are being tested now
- Focus on today, enjoy family life and celebrate what your child can do
More guidance is available
Email info@duchenneuk.org to order a copy of the Duchenne UK Newly Diagnosed folder for more guidance on this stage of your child's life.
