Creating a children’s MS book together

I’ve always wanted to get involved with projects for children and families. So when I was approached about creating a resource I had to jump at it. As a mother, and through other parents, I know MS impacts on our children as well as us.  

I was diagnosed with MS 8 years ago, and since then I’ve done a lot with the MS Society. Campaigning, blogging, even singing and dancing… and now co-leading a team to create this new book and soft toy. 

Involving my son 

My son’s been involved in a few things, even as far back as 2019, when he was only 5. And he wanted to be involved in this too. A few years back, when I started to make him aware of MS, he enjoyed watching the MS Society video for children. He was keen to help make something new.

The ‘co pro’ team

Working with the MS Society Digital and Content team, we formed a co-production group. A team from the MS community with different voices and perspectives.  

We were people with MS, with children of different ages, a researcher in the field, an illustrator, designer and writer. We had to think about people that 'weren't in the room' as well, so we weren’t tunnel visioned with just our experiences.  

We kept in touch online. That’s where we emailed, had our meetings and discussions and voted on ideas. It was very flexible.  

My son looked forward to the meetings, when he could share his thoughts directly with the group. Even thinking about how children could take it in. There are things in the book that came straight from what he said!  

Why a book and a toy?  

We started 2 years ago with our first thoughts and ideas. We wanted to do something for families with primary-age children. So first we had to decide what we could create that would be most helpful.  

We settled on a book. It’s something young children can look at with an adult or alone. At their own pace. A bit later on we agreed a soft toy of the main character Tingo would also be helpful. For younger children, a toy is so comforting.  

A highlight for me

My highlight was going through the pages of the draft book and really looking into the finer details. And to see my son flourish as he did the same, then he’d share his views with the group too. Wow, to see how involved he became and confident in understanding MS even more through this journey.  

It’s been exciting, interesting and fun to be a part of this project. It’s so rewarding to see how your ideas and work all come together. And how much that creation could benefit other people. It really connects with me from the first conversations, having something for families.

Starting family conversations  

I hope the book and Tingo toy will open up more conversations about MS. Allow it to be a part of family life, where everyone feels comfortable talking about it. A safe way for children to feel they’re part of the journey. 

The book is a nice light read, so it leaves space for people’s own ways to talk about their MS. There are also pages for children to write or draw their questions, thoughts or feelings.  

That’s something my son feels is important:  

“I like how the book tells children how MS might feel. And it’s good because your parent can get it back and see how you feel.”  

During the making of this book I’ve found out more about what my son knows and how he feels. He’s learned a lot over the years, but I noticed he still wanted to check he understood a couple of things along the way. And I see him finding comfort in Tingo, which is something just for him.  

Keep a look out for Tingo and think about what MS is to you in your own family.

Meet Tingo and order our children's book