Children & Young People

The staff at Alopecia HQ have not long come down from the high of our annual Alton Towers event and we’re already looking forward to 2020! We caught up with two families who have joined us for three of our Alton Towers events and have become firm friends, We asked mums Lisa and Carol, and their daughters Enya and Chloe (both of whom have alopecia) to explain what the event means to them…

Firstly, hello to Mums Lisa and Carol! Why don’t you start by telling us a little about how you came across Alopecia UK and subsequently what made you decide to join us for the Alton Towers trip?

Lisa: I found out about Alopecia UK when Enya was first diagnosed 2 and a half years ago. When she was diagnosed I was given no information or advice at all and felt so worried with no idea what to do or where to get help. Luckily at that time there was an online forum for dermatology happening that month and I posted on there asking for advice. I was told by someone about Alopecia UK and was put in touch with Amy (AUK’s Communications Manager). I then bombarded Amy with questions and she was amazing. She even came to Enya’s school and did a presentation to the whole school about alopecia which helped Enya so much. We wouldn’t have made it through those early stages without the support of Alopecia UK. I joined the charity’s Facebook group and subsequently learned of the Alton Towers trip. I’ve always loved rides and Enya was beginning to become interested in them so I booked us onto the event as I had a feeling it would be good for Enya to see, meet and spend time with other people with alopecia. I had no idea how much of an effect it would have.

Carol: Chloe has had Alopecia since she was 2, when she developed Alopecia Universalis. At that age we dealt with it on our own as she was such a happy child and we didn’t think we needed any support. Her hair started to grow back just before she started school and over the course of that 1st year almost of all it came back but would develop some small patches that would then re-grow. In 2015 when she was 8 a few more patches developed and she was starting to become more self-conscious of it so we talked to Chloe about going to a support group, so she could see she wasn’t on her own. We struggled to find an age appropriate group locally but found Alopecia UK website and saw that they ran an annual event at Alton Towers. We had been Merlin pass holders for a few years prior and Tim (Chloe’s dad), Chloe and her little brother all enjoy theme parks so we decided this would be a great way to break the ice for her and meet up with fellow sufferers of her own age as well as we could meet some parents.

We attended the 2016 event but made the silly decision to combine it with a family get together with Tim’s brother and family. Chloe wanted so desperately to see and spend time with her elder cousin (Beth) that we did not join in with the AUK organised groups. We did sit with them during lunch which meant Chloe was able to see she wasn’t alone with alopecia, but she didn’t get what we as parents wanted, the chance to talk to children of her own age about it and her feelings.

In 2017 we suggested to the extended family that they didn’t come to the AUK event and instead they met up with us on the following day so this time Chloe could join in with her age group. We arrived, Chloe and her Dad went and joined the respective age group and I took her brother, Nanny and Grandad to the younger group. Within an hour of us going our separate ways her Dad had text me to say before they had got on the first ride she had made a friend and he and her friends mum had been relegated to sitting next to each other on the rides as the 2 girls wanted to sit together. That friend was Enya, they just clicked straight away and didn’t stop talking to each other for the entire day. With Chloe having been to Alton Towers before she was able to tell Enya what the rides were like but she forgot to mention the best part of Thirteen, and apparently when they got off Enya nearly killed Chloe!!  Both girls had mobile phones with them and exchanged phone numbers, email addresses, ‘Musically’ names (whatever that is) so they could keep in touch afterwards. There were quite a few tears at the end of the day and we almost had to pry them apart. Since then there is not a week or probably even a day that goes past when they don’t communicate with each other in some way or another.

For the 2018 event we decided to all stay in the local Premier Inn so we could all have dinner and breakfast together. The girls where again joined at the hip all day and we had to pull them apart crying as they didn’t want to leave each other.

This year (2019) we again stayed at the Premier Inn but as Enya’s family also had Merlin passes we decided to make a weekend of it so went back to the park on the Sunday for more Alton Towers fun together J. This year Chloe’s and Enya’s brothers were both over 1.2m so they could go together on some of the more adrenalin fuelled rides which made it more fun for them and they have become good friends too.

How do you think joining us at Alton Towers has impacted the girls’ alopecia journeys’?

Lisa: I think the Alton Towers event was a huge eye opener for Enya and really made her realise that she wasn’t alone in this journey. She could see such an inspiring array of amazing people with various forms and stages of alopecia and it really pushed her to become confident to not wear a wig. She went from wearing a wig constantly to occasionally and then not at all! It gave her a massive confidence boost.

Meeting Chloe and her family is probably the biggest and most important thing that has impacted Enya’s journey. The girls talk on the phone and by text and facetime and social media ALL THE TIME! It’s great to see the very deep bond that they’ve developed and luckily their younger brothers Casey and Ethan also get on well and we as parents as well so it’s good for all of us. I also feel it’s important that Carol and I also now have each other to talk to, like the girls it’s easier to feel that connection and talk to someone who knows how you are feeling and has been through the same things. The girls are a great little support system for each other and I’m certain they’ll be friends for life as will the rest of our families.

Carol: After Chloe and Enya became friends at Alton Towers in 2017, and after much badgering from both of the girls as they wanted to see each other as we live over 200 miles apart. Lisa and I made arrangements for us to get together near their hometown and we spent a day at the local museum, bowling alley and went for something to eat. They have also been ‘down South’ to our house and we spent the weekend visiting Chessington and just having fun together. They have become total ‘BFF’s and they don’t actually talk much about their alopecia. I think they just really enjoy each other’s company and although they don’t talk about it much they know they can if they need to and that on the end of the phone, text message, WhatsApp etc there is someone who is or has been going through the same feelings, problems, issues, experiences etc.

It has also been good for us as parents as we have become good friends too and are able to sound things out with each other and we understand what each other are going through.

We believe that it is good for the girls to be able to have this friendship where they are open about their alopecia, the down side is they are 100’s of miles apart but thank god for technology J, but they always know that even if we cannot arrange to meet any up at any other time that the Alton Towers event is something to look forward to each year and a chance to see each other.

What as parents do you guys get out of the day?

Lisa: As a parent for me it’s about what Enya gets out of the event. The first time we came just myself and Enya as I wanted the day to be about her and for her. The following two years we have come to the event as a family with both parents and Enya’s little brother. Chris and Casey go in the younger group with Chloe’s brother and Carol and I Enya and I go in the big rides group with Chloe and her Dad Tim. This means that the boys still feel part of the day and have a great time together but the girls get to spend some quality time in the group with others their age. Meeting up at lunchtime time with everyone is great, the atmosphere is good and having the annual photo and showing how much the event has grown is really overwhelming. It’s really important for me to make sure Enya feels like she is not alone as I know that is what really helps her, being around others her age, older and younger, really builds that confidence to continue doing what she’s doing and dealing with her alopecia with the courage that she has built.

Carol: Talking to other parents of children with alopecia as well as to adults with alopecia really helps us to empathise with the girls as well as with parents. It is somewhere we can all talk openly with each other about attitudes, possible treatments or things some people have found have helped them with the condition. It helps you realise that you are not alone and that others are going through the same feelings, problems and issues that you are and they can help you and you can help them with advice and just general chat.

Let’s bring in Enya and Chloe! You two have become really good friends through the Alopecia UK Alton Towers trip. Why is the Alton Towers event so important for you guys?

Enya: The Alton Towers event is so important because it has great memories and we get to spend some quality time together. We both love rides so it’s just great fun for us. This is of course how we met and as we don’t get to meet up very often as we live so far away from each other so it’s so important to us to spend that time together with each other and with other kids we’ve met through this event and at our local support groups.

Chloe: I think it is important because we get to be together as well as meet up with each other’s new friends made through our local support groups. We get to have fun with each other on the rides, in the queue for the rides and throughout the day.

It makes me feel a little more normal than usual as there a lot more of us together with alopecia and we get to learn about each other’s experiences, issues and feelings and about living with it.

And what are your favourite parts of the day?

Enya: I personally enjoy every bit of it but if I had to pick it would be dinner. It’s great to be able to sit down with everyone and eat dinner and see just how many people have come to the event. It’s brilliant to see so many people there and it’s getting bigger every year.

Chloe: Seeing Enya

Meeting up with new friends

Going on the rides

The big Runaway Mine Train meet up at the end of the day

Do you girls have any helpful tips for any children or families who may be a little nervous or who aren’t sure if they should join us for the event?

Enya: If you love rides and want to make some amazing new friends that have been through the same as you, like me and Chloe have, you should definitely join the event. It’s a great event and helps you to know that you’re definitely not alone. I can’t recommend this event enough, it is one of my favourite times of the year. Meeting Chloe at Alton Towers was of the best things that could have happened to me, she’s been a massive support to me and I hope I have to her too. She’s my bestie!

Chloe: I have found it has helped boost my confidence knowing I am not alone, and I have made lots of new friends and of course 1 ‘BFF’.

Make sure you join in with a group and don’t do like we did that first year and spend time with family, as you miss out on the best parts of the event. Also make sure you join in with all the days activities like the lunch time gathering and the Runaway Mine Train meet up at the end of the day, as these are great fun.

And Mums, same question?

Lisa: Just give it a try, you’ve nothing to lose. There are things to do for all ages whether they want to go on big rides, little rides or skip the rides. It’s a great event and I hope that it continues for a long time. There’s no need to be nervous there will be plenty of amazing new people to meet that will hopefully become lifelong friends.

Carol: Even if you don’t want to ride the big rides, go in the queues with the right age groups as that is where you and they get the most benefit, you don’t need to get on the rides you can always walk through and wait for them after they have been on and as most theme parks you actually spend more time in the queues than you do on the rides, it is time well spent getting to know each other and just talking to parents of children or people with alopecia.

Is there anything else you think people reading this should know about the Alopecia UK Alton Towers trip?

Lisa: The trip is a great day out for support, meeting new people in the same situation and really flying the alopecia flag. I can’t recommend it enough, it doesn’t matter whether you like rides or not the day is about so much more than the theme park. I can’t thank Alopecia UK enough for everything they’ve done for Enya.

Carol: Great day to meet people with alopecia and share your journey and it’s not all about the rides, on this day we don’t expect or want to do many rides if its busy it’s about talking to the others in the same group and not having to explain what alopecia is.