Sophie’s Story
Sophie, 15, recently spoke to CLAPA about her experience growing up born with a cleft.
Sophie was born in 2008 with a form of cleft called a holoprosencephaly (HPE), pronounced ‘hah-low-prah-sen-seh-fuh-lee’.
A holoprosencephaly is when the brain doesn’t divide into two halves when a baby is growing in the womb. This can affect facial features and, like with Sophie, can cause a cleft lip and palate.
Sophie said, “Throughout my life, I have attended many hospital appointments, and so far, I have had four operations. I have struggled to find people to talk to who know what I am going through and how to help.”
“This can cause me to feel isolated, as I don’t know whether other people feel the same as I do, however with CLAPA I know that there is always someone to talk to who has been through what I have.”
Helping others
Sophie joined CLAPA’s Children and Young People’s Council (CYPC). A group that represents other young people born with a cleft to have a say in shaping CLAPA’s services. Sophie said, “Being a part of the CYCP has been great for me, and I will always be grateful for the experiences I have been able to be a part of, and the people I have met.”
Most recently, the CYPC, including Sophie, held an online event where they discussed bone graft surgery, a common surgery for many people born with a cleft. Sophie explained to CLAPA, “It helped inform younger people what [the surgery] is like and how to feel more comfortable going through it.”
“It has also helped me too, because I am having another bone graft in a few months and I had forgotten most of it. My first one was a few years ago! I need another one because I was born with only one upper incisor in place of the usual four and so I will need implants when I am older.” She continued.
The CYPC connects young people across the UK who have faced similar challenges, this can help them to make new friends and gain confidence from each other. “Throughout my time involved with CLAPA I have grown in confidence as I have been able to connect with people my age who understand me, and I have been able to help people with what they are going through, as I have gone through the same,” Sophie said.
Gaining confidence with CLAPA
The charity hosts Camp CLAPA (formerly named Residential Weekends) throughout the year for young people born with a cleft lip and/or palate. The weekends are packed with outdoor activities and team challenges and encourage young people to build friendships.
Sophie said, “They organize great weekends away doing exciting things like water rafting and rock climbing. They have all been great fun and a great opportunity for me to make more friends and become more confident in other situations. I went to my first when I was nine years old and my confidence grew overnight. I loved meeting older teenagers and other adults – born with a cleft – who are fantastic role models.”
“CLAPA isn’t just a charity; it’s a really helpful organization. They offer a range of support that has been crucial not only in my journey but also in the lives of loads of others affected by cleft conditions,” She continued.
Adding the ‘fun’ to fundraising
During Cleft Lip and Palate Awareness Week in 2022, Sophie and her family took on a fundraising challenge for CLAPA, walking from Winchester to Southampton, along the Itchen Way.
Taking a few wrong turns on their journey – adding an extra three miles onto the 12-mile target – Sophie recalled, “We got lost in the dark and almost walked into a sleeping herd of cows. It was like a mini safari adventure, we saw Alpacas and bats that started to fly around our heads” She said.
Raising over £1800, Sophie said, “We had so much fun, and it felt great to contribute to CLAPA.”
Final thoughts
“If you or someone you know has a cleft, remember, you’re not alone. CLAPA is a friendly club where everyone understands and supports each other. It has been amazing for my confidence. I know that I can turn any challenge into something fun and rewarding. I can celebrate how pretty cool my condition is. I can speak to strangers about my cleft and my appearance with confidence and pride” Sophie said.
Thank you to Sophie for sharing your story with CLAPA.
Would you like to share your story with the CLAPA Community? We’d love to hear from you, wherever you are on your journey.
