Shout Magazine interview with Anna Mae and Keeleigh
I was diagnosed with Charcot-Marie-Tooth (CMT) when I was two years old, and was diagnosed with Cherubism when I was four. I can’t remember it as it’s something that has always been the same for me.
“CMT is a muscle wasting disease that affects my arms, hands, legs and feet. I get really tired physically, which can make me fall over. Cherubism is really rare, and there isn’t a great deal known about it. It’s where the bones in my face are eroded and replaced with many benign tumours, which also affects how and where my teeth grow.
“I don’t let my CMT affect my life too much — I can do everything that everyone else does, but sometimes it’s in my own way. I can walk, but I get tired easily and I have lots of falls and trips, so I use a wheelchair sometimes.
“Cherubism is the condition that bothers me most, as people want to keep me safe and want to stop me doing things, like horse riding, which is frustrating as I’m not as fragile as they think and I love horse riding.
“For my CMT, I used to spend one week in every four with both my legs in casts and I’ve also had two operations to lengthen my tendons, so that I can put my feet flat on the ground.
“My Cherubism has made all of my teeth displaced and in very odd places — I’ve had to have a tooth removed from my nose cavity. I have also had another operation to remove a tooth that had grown in the wrong place and they had to remove it without anaesthetic — which was awful!
“I have another operation coming up for a tooth that’s trying to break through into my sinus cavity, which has been really painful and caused me to miss a lot of school.
“My illnesses really affected my ability to make friends. Until the last two years, I always had to have a ‘one-to-one’ with me at all times at school, which I hated as it stopped me from making friends. Thankfully, my school took steps to help me overcome this and I’ve now made friends, and my independence is growing by the day.
“Sometimes people can be unkind and say nasty remarks, but those people are just ignorant. It does hurt my feelings, though, and I think that my confidence suffers because of this— thankfully, I’m a naturally happy person. In fact, my nickname is ‘Smiler’, because I try to stay so positive!
“Thankfully, I’ve made some lifelong friends at my riding stable who’ve truly accepted me for who I am. They don’t see me as any different from anyone else, and they also help me out when I can’t see to my horse, Lola, and never make a big deal of it.
“My family have supported me in every way possible! I love my whole family very much. I see a lot of difficult aspects of life as we are a foster family, and really do feel blessed that my family are my family — I couldn’t have chosen better myself!
“I first heard about Post Pals after I went on a wheelchair course and was given a flyer about them — I love Post Pals! They were there for me when I didn’t have any friends. There was always a letter, card or sometimes a present dropping through the door, which were all lovely. I used to take the letters into school to show and tell which gave an opening for my classmates and teachers to ask me questions they felt embarrassed to ask.
“It gives me a really warm feeling that someone has taken the time and trouble to think of me. One girl called Kim often sends me gifts, which is so nice — I especially love the Lush bath bombs!
“Post Pals is important as they bring so many openings for young people and their parents — it’s such a lovely feeling knowing that you’re thought about all around the world, and I just want to say massive thank you from the bottom of my heart to everyone involved with Post Pals!
I was diagnosed with Chronic Renal Failure when I was two, so I’ve lived with it all of my life.
When I was younger, I remember my mum saying to me that my kidneys were like a washing machine for the inside of my body, but mine were broken. I think I took it really well. I’m the type of person that just gets on with it, so I wasn’t too upset about it.
“My condition can vary quite a bit. Sometimes I feel up and everything’s fine, but then the next day I can feel really tired and drowsy and quite achy and sore.
“The biggest way it affects my life is the special diet that I have to eat. Because of my illness, I can’t eat fruit, vegetables, potatoes or dairy — it’s really annoying. Instead, I eat a lot of pasta and rice, but I don’t really like it, so the diet is definitely the worst part of my illness. A lot of the food I have to eat doesn’t really taste of anything, and my diet also makes me quite bloated and makes my stomach swell.
“My illness also affects my height, so I won’t grow to be as tall as everyone else. The doctors have said that I could take a growth hormone to help me grow, but I haven’t decided if I want to take it yet, as I’m not sure if there are side effects or if I really need to take it.
“I’m currently waiting on a kidney and liver transplant, which will hopefully make me feel much better. I’ve been waiting since last November but I don’t know how long I’ll have to wait to get one, as it can happen at any time.
“The thing that I’m looking forward to the most after I get the transplant is feeling better and being able to do more! I’ve been told that when I get the transplant, it’ll take between six weeks to three months to recover from the operation and start to feel better.
“I’ve been in and out of hospital quite a lot — around ten times in the past few years. It’s quite hard because I keep missing time off school — the longest time I’ve been in there has been two weeks, which isn’t so bad. It’s when I’m in hospital that I wish I was normal, as I don’t really enjoy it there.
“I’ve had a few different operations in hospital, but I prefer not to know what they are when I go in. Normally after the operations I feel quite tired and sore — my body feels like it’s stinging all over, which can last days or weeks.
“Luckily, my family and friends are really supportive; they’re always there for me and I know that I can always talk to them about anything.
“Some people in school can wind me up from time to time, like offering me crisps or chocolate, knowing that I can’t eat it and they’ll be like ‘Oh, no, I forgot!’, but I try not to let it get to me. I think they don’t really understand what it’s like for me or they just don’t believe me. Thankfully, my friends always stick up for me, which is great.
“I hate when I’m ill because I miss my friends and it can be hard to keep in contact. I worry that they think that I’m just ignoring them, but most of my friends understand what it’s like for me.
“I first heard about Post Pals through Facebook, so I asked my mum to register me. Post Pals is a charity that works with ill children all over the world and asks other young people to write cards and letters to them and send them gifts to cheer them up!
“When I feel down, Post Pals always makes me smile through all of the great letters and gifts I get! I couldn’t pick a favourite, because every one of them has made me happy. I’ve also made a few really good friends through Post Pals, which is great!
“Post Pals is important because it puts a smile on loads of ill kids’ faces, some of which are a lot worse off than me. I just want to give a really big thank you to Post Pals for all of the support and happiness they have given me, and I want to thank everyone who has taken the time out to send in letters and gifts to me!”