Let’s get through this together
Inspired by her little sister’s journey, Maryam Hussain has written and designed a book to help children come to terms with pulmonary hypertension. She explains more about Exploring PH with KiKi the Koala, and how she hopes it will make a difference to others.
“Fatima is now 11, but she was diagnosed with PH in 2017, when she was just five years old. It was a huge shock to us all as a family, and it literally spun out of nowhere. We were thrown into a puddle of the unknown and we had to swim our way out of it.
I think it was very hard for us to all understand what PH was and the effects it could have both long-term and short-term. Words like ‘terminal’, and ‘life-threatening’ were used, and my sisters and I were all still children at the time.
There’s a lot of us (five sisters in all!) and we always lean on each other, so it was nice to have them around during that fear of the unknown. We cherished the small things more because we knew that they weren’t promised.
Fatima has definitely adapted over time, but it has stopped her from doing a lot of things.
She’s at the age now where she is coming to terms and understanding what PH really is, and she can see how it affects her body more now because she is getting older. You can’t really expect children to understand fully though because even as an adult I sometimes can’t get my head around it.
Fatima is an outgoing and outspoken girl. She has such a strong personality and is hands down the funniest person I have ever known. She is absolutely hilarious. She is very passionate and very creative. She loves anything art based. She loves singing and she loves animals.
Fatima is literally my best friend; we do everything together. We like going out for days out in central London, we like going out for food, we do painting, and we have pet bunnies that we spend time with together.
The idea for the book came from a university project. I’ve just finished a degree in advertising and brand design and as part of the course, I was asked to create something I was passionate about.
I came to the realisation that my passion lays with helping people who don’t feel like they have access to the help that they need. Then I looked at Fatima and how much being diagnosed with PH affected her, partly because she didn’t really understand what it was. So, it all stemmed from there.
KiKi herself is definitely a reflection of children with PH, so they don’t feel isolated, and like they can relate to someone else and not be the child that is ‘different’.
But she also becomes something bigger, in that she’s a support system for the family as well, and I hope the book can be used as a tool to have important conversations.
The book is aimed at children aged around three to nine. Readers can follow KiKi’s journey through learning how to cope with pulmonary hypertension and learning just how special KiKi is – just as they are too.
Because the book is based on my sister’s journey, KiKi is essentially Fatima in a koala bear. I chose a koala as the main character because people think koalas are bears but they’re actually marsupials. That made me think of children with PH; just because they may look happy and healthy, it doesn’t tell the full story. It’s not always what you see on the surface, there can sometimes be more.
When I spoke to Fatima about what I was doing I think that she was very happy to finally have a say in how she was being portrayed, rather than being dictated by these stereotypes that you have when you find out you’re a child with a ‘condition’.
I would say that she is pleased and happy and excited to see where KiKi goes and how she grows. I hope that she grows with her, and I think she is proud of me for doing this.
I’m pleased to say that when the book was marked as part of my degree, I got a really good grade. But it’s been about much more than that; and I’m excited so see where this all goes. I will always refer to this as my ‘passion project’.”