Penni May is 12 years old. She was the first young guest writer for our Thumb Print magazine at the MND Association, in 2020. This is the piece she wrote for us.
I enjoy drawing and all sorts of art.
I enjoy sports – mainly running, rounders, cricket and gymnastics.
I love school. I have lots of friends and I enjoy so many of my lessons, but there’s some I could happily live without!
I had this amazing opportunity to write for Thumb Print magazine because years ago my dad started to get symptoms of MND. It sadly took over his body. He has had it all my life.
I always wished there was someone I could talk to about MND. I worried if I talked to mum and dad, it might upset them. But I know now that they like me to talk to them about it.
For all the children out there keeping emotions to yourselves, please don’t. You don’t need to be afraid to talk to someone. Nobody will judge you.
I don’t really like to talk about MND as it upsets me a little. We just deal with every day as it comes and always hope for the best.
Having a parent who isn’t well, is hard. I don’t always get to do the things that other families would do or experience. But I have had some once in a lifetime opportunities, that not many other people would have had.
In 2014, I went to the O2 Arena in London and walked out on the court at the ATP Tennis Tour, while holding onto Spanish player David Ferrer’s hand and the biggest tennis ball I have ever seen! We then got to watch the match between him and Rafa Nadal – the atmosphere was amazing!
I have also been around Silverstone in a Ferrari. It was so fast I think I nearly threw up!
The MND Association organises events and recently arranged The Big Picnic. All the family and our friends could go and have a fun day out, without having to think about MND or our worries.
I also go to a Young Carers Club which allows time out with children in the same situation as me.
As a family, we enjoy going away in our campervan, it’s like a home away from home.
Amelie is aged 10 and Olivia is aged 7. They are sisters and their Mamgu has MND. Mamgu is a Welsh word for Grandma. They held a bakeit! fundraiser and this is their cup-cake recipe. Ask a grown-up for help if you’d like to bake. The oven gets very hot.
110g castor sugar
110g self-raising flour
1 tsp baking powder
3 free range eggs
For the icing, use 200g icing sugar mixed with a little water until smooth but not too runny
What to do:
Whisk the margarine and sugar until light and fluffy. Then whisk in the eggs, one at a time. Fold in the flour a little at a time, until all mixed in. Spoon the cake mix into cup cake cases. Bake on a baking tray in the oven at 180o until golden. Take out the cakes and let them cool down. Spread on the icing. Add blue and orange sprinkles and enjoy!
“Fun activities can help children like me, as much as practical things.”
“I like talking with my family about things we’ve done together.”
“My friend’s Dad has MND and he’s a really nice person, but he can’t do the things he wants to do.”
“I’d like to meet more children like me, who know someone with MND.”
“Sometimes, just going for a milkshake helps me feel a bit better.”
“When other children and friends know about MND, it helps me have fun with them.”
“When my step-grandad got MND, I didn’t know what it was or what it did.”
“Doing fun activities with the person who has MND gives you time together.”