Peer Support Volunteers who are parents or grandparents

Our friendly parent and grandparent peer support volunteers understand what it’s like to have a child in the family receive a diagnosis of a muscle-wasting condition. Below is a list of volunteers who have this experience and are here to provide you with support and advice. We will be adding more volunteers to this page once they have completed their training.

For more information or to get in touch with someone please contact the information team.

 

About me: My son Connor has Duchenne muscular dystrophy.  I started a local support group for parents of children with the condition in March 2015 with social events and trips. I really enjoy baking and country walks.

Why I became a peer support volunteer:  I remember very clearly how I felt before I found people in a similar situation to myself. I felt very lost, confused and overwhelmed and a real need to talk to others who understood. Once I found other’s in a similar situation I started to see things more clearly and I knew I wasn’t alone.

Top Tip:  When attending appointments, especially when first diagnosed, take someone with you or take notes as it can be difficult to remember what’s been said.

About me: As well as being a peer support volunteer I am also a founder of the Neuromuscular Awaaz Forum. The Neuromuscular Awaaz forum has offered me great opportunities to meet families affected by muscle wasting conditions, share our experiences, make friends and provide support and a good listening ear. 

Why I became a peer support volunteer: I am a parent of a child who has Duchenne muscular dystrophy and I recognise and understand that living with this condition involves a lot of thoughtful planning, a roller coaster of emotional feelings, never ending questions of now and the future and many challenges. I strongly believe that together we are stronger and together we can fight muscular dystrophy.

About me: I am a carrier of Duchenne muscular dystrophy. My son, David, has the condition.  My hobbies are shopping, walking, reading and eating out.

Why I became a peer support volunteer: I would like to help other families to cope with the ups and downs of living with Duchenne muscular dystrophy.

Top Tip: I would say take each day as comes and enjoy life.

About me: My son has Duchenne muscular dystrophy. I enjoy family days out, the occasional theater night out, and writing.

Why I became a peer support volunteer:  I come from a family with a long history of Duchenne. I lost my brother and 3 uncles to Duchenne and in 2012, both my son and my cousin’s little boy were both diagnosed with Duchenne. I wanted to become a Peer Support Volunteer because I have seen first-hand the lack of support for families after diagnosis. The post diagnosis period is a very scary time for families and this is even worse when they have never heard of the condition and are simply left to rely on ‘Google’ for information. I found great value in speaking with other families following diagnosis and I would like to help other families in any way possible.

Top Tip:  Don’t believe everything you read on Google.

About me: I’m a mum of three wonderful children, the youngest of which, Jessica, has multiple disabilities and was diagnosed as a manifesting carrier of Duchenne muscular dystrophy when she was 3.

Hobbies/interests: I like cross-stitching, reading, zumba and walking with friends and our dogs. I enjoy fundraising and volunteering for causes close to my heart, and have completed a shark dive, a race for life and a North Sea dip!

Why I became a peer support volunteer: I understand how isolating and lonely a diagnosis can be. If I’d have been able to speak to someone who understood what my family and I were experiencing, it would have been a huge comfort to me.

Top tip: Never be afraid to ask for and accept help and support – you are not alone. If you can connect with others, in the same situation, who understand, it will make a huge difference.

About me: I am married, with two children, Sarah who is 17 and Jonathan who has Duchenne muscular dystrophy and who is 10 years old. I like to socialise, good food, cooking and eating out.  In my spare time I like to read, watch sport, particularly football, rugby and golf. 

Why I became a peer support volunteer: Fundamentally I want to help people.  I have raised money for the charity, and whilst that is rewarding, I feel that helping and mentoring peers is something more worthwhile.  This is something that when we were diagnosed we struggled with but we were fortunate to have some family support. If we can help some parents who do not have as much support as I did, then we are making a significant difference.

Fun Fact: I once appeared on stage in a play at school with someone who became a bond villain!

Hobbies/Interests: I enjoy playing golf, walking the dog and keeping my garden (and that of my daughter too) looking good.  I also like going abroad for holidays and my favourite destination is Cayo Coco in Cuba. 

Why I became a peer support volunteer: I want to become a peer support volunteer because I want to find more ways that I can help. When my grandson was diagnosed with Duchenne we didn’t know where to turn or who we could ask for more information and advice.

About me: I have been involved with Muscular Dystrophy UK for around 10 years.  My daughter has minicore myopathy muscular dystrophy; an extremely rare strain.  Being involved with the charity is an important part of my life and I have met so many people attended some great events.

Why I became a peer support volunteer: To be available for anyone who feels isolated and alone following diagnosis.  When my daughter was diagnosed at the age of 8 I had no one to talk to, no one to tell me that the tumultuous feelings I had were normal and quite OK.  It’s a tough time in our lives and we all need someone to listen to us and lead us forward. My support for my daughter is a key part of my life, watching her achieve is fantastic and I am lucky to be a part of her life.

Top Tip: I’ve learnt a great deal – but the possibly the valuable thing I have learnt is to question, question and question again without fear of rebuff.

Fun Fact: A true highlight of my involvement with the charity was the fundraising trek I did with other supporters across the Moroccan Sahara Desert in 2008.  An enriching, diverse, exhilarating experience with 20 likeminded people, at least 10 of whom I am still very close to.

About me: I enjoy sport and anything outdoors, including walking the dog and camping with friends.  The whole family enjoys music and we have just started taking the kids to a few concerts.  I can also lose myself in a book very easily! 

Why I became a peer support volunteer:  Since two of our children were diagnosed with Muscular Dystrophy, talking to people has been critical for me.  I would like to help someone else going through the same thing, even if it is simply being at the end of the phone when they need to talk.

Top tip: Planning for rest as well as activity is crucial!  Try to experience everything that you are passionate about – even if that has to be done in a different way because of Muscular Dystrophy.

About me: My granddaughter has congenital myotonic dystrophy and my daughter also has myotonic dystrophy.  I work in a retail discount store, and enjoy weekends away in my caravan. I have also joined up with three other mums to create congenital myotonic dystrophy fight fund in association with Muscular Dystrophy UK, so we can raise funds to help find a cure.

Why I became a peer support volunteer: To help other people in similar situations, by being someone they can talk to, who is able to understand the emotions and can relate to the impact a diagnosis can have.

About me: I am the mum of two children with a rare form of muscular dystrophy. In my spare time I love reading, supporting the work of Muscular Dystrophy UK and being outdoors.

Why I became a peer support volunteer: I have learned and experienced a lot over the years engaging with services and whilst caring for my children. I’ve often looked back and wish I’d found out about something sooner or wanted to have someone to I could talk too especially when at times, it’s been difficult to access services. I’ve learnt a lot from other parents who have kindly shared their experience and hope I can help others in the same way.


About me: I have been volunteering with Muscular Dystrophy UK for the past five years with my son Vivek , who has Duchenne muscular dystrophy. I am a registered nurse and had worked until recently at a local nursing home.

Why I became a peer support volunteer: I joined the peer support network because talking to someone who went through the same challenges would have been very useful to me and my family as we were going through the diagnosis and life afterwards. I feel passionate about this group and look forward to making a difference for other families by sharing my experience and first hand knowledge.

Fun fact: Gardening is my passion, being out in nature and breathing fresh air, walking and best of all just enjoying a cuppa with friends and chatting

About me: My husband, Allan, and I have two children, Finn (5) and Emmie (4).  I work part time as an administrator, as well as having my own sewing business.  I love being outdoors, cooking and crafting. 

Why I became a peer support volunteer: Emmie was diagnosed with Congenital Myotonic Dystrophy shortly after her birth, following this my mum and myself were diagnosed with adult onset.  Whilst it does not impact my everyday life I do have quite a few symptoms, my mum has since had heart surgery and of course, my daughter has daily challenges to overcome.  Earlier this year, myself and three other families set up a family fund, Congenital Myotonic Dystrophy Fight Fund, with two primary aims – one to raise money for research and secondly to provide families with support into this rare condition.

Top Tip: speak up – don’t be afraid to question a doctor, you know your child best and if you have any concerns you should raise them.

Fun Fact: Day time TV is my guilty pleasure, fortunately I’m not at home that much to be able to indulge!

About me: I have an adult daughter with distal myopathy in both lower limbs, this has only come to light in the last 6 years. and identifying diagnosis has not been able to be made.

Why i became a peer support volunteer: I want to be able to help young adults to reach the services and have the knowledge they need. Young adults who have a diagnosis do struggle to get everything they are entitled to and linked up with services.

Hobbies / Interests: I am passionate about swimming and love the outdoor life. walking cycling and travelling, I have good background knowledge of health due to my work.

Fun Fact: I have climbed Kilimanjarro for Muscular Dystrophy UK in 2012 with my daughter and my husband proposed at the summit

About me: I live in Bromley with my husband Barry and our children Olivia and Luke, aged 5 and 3.  I am a full time mum and carer for my children.  I enjoy reading when I get the time and love going to my weekly Zumba class. 

Why I became a peer support volunteer:  When my daughter was diagnosed with autism in 2012 it was a very daunting time with limited support and I felt very alone.  When my son, who also has autism, was diagnosed with Duchenne muscular dystrophy in 2013 I felt my already small world had got so much smaller.  At the time of diagnosis I knew nothing about Duchenne – I was scared and lonely.  I wanted to become a peer support volunteer to hopefully offer a little understanding to those going through the same diagnosis.


 

For more information or to get in touch with someone please contact the information team

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