In a world where we don’t celebrate our differences enough, these interviews speak openly with families living with rare medical conditions or disabilities. The aim of the series is to raise awareness and show how living with such conditions affect the lives of those diagnosed and their families.
Today we interview Vicki who is the mother to a trio of amazing young ladies. Her eldest, Jessica, has Carney Complex which is a rare condition where the body forms tumors, which are thankfully mostly benign but mainly form in the heart.
The family has had to come to terms with some devastating news but they still love adventure and with every opportunity they like to get out and about to do something fun. They live by the moto "We live for today and hope for the future."
Tell us a bit about your family?
I have 3 girls, Jessica aged 13, Jasmine aged 9 and Jade aged 8. All of my girls are different in their own ways. Jessica has Carney Complex which is under consistent review, but she is well and living as normally as she can.
Jessica is 13 years old now and loves music and being with her friends. During the winter months she loves snuggling up with me watching films and other random things on TV. Her favourite colour is red, and she has a fantastic sense of humour. She also participates in majorettes and has performed with the group (we never thought she would be able to do performances and commit to fine motor skills due to her delay but she's loving every minute of it)
Her sisters Jasmine and Jade are amazing little souls. Jasmine is the creator in our family and she loves dance, music, drama and gymnastics. Not a day goes by when she's not being creative and making noise! Jade is 8, she loves food, and is a snuggly child, she's fairly quiet but knows what she wants and how to get it!
We try to be an active family and go swimming at weekends, we also love cycling when the weather is kind. We all love adventure and every opportunity we get we go somewhere and do something, we have a very active lifestyle most of the time.
Please tell us a bit more about the condition you are living with?
Carney Complex is an extremely rare condition where the body forms tumors, which thankfully are mostly benign, but mainly form in the heart. To date, we have been lucky.
We have been told Jessica may have a limited lifespan but this was 7 years ago and we are coping much better with it than we were.
She also has Global Learning Delay.
What is your story and how does the condition affect your daily life?
The day we were told about the condition was a massive shock to our system. We had no idea she had a body that could kill her.
During her first year in school, they alerted me to Jessica’s developmental delay and that she needed a lot more help academically, but nothing was ever mentioned through nursery so this was a shock. Then one day I was called into school and they informed me they suspected there was something wrong with her brain as she would be mentally present one minute and completely absent the next and they said that her memory was poor and varied from day to day.
We were referred to GP and then the Educational Psychologist who was amazing, she couldn’t pinpoint anything in relation to her needs. Therefore blood tests were done and this was when we discovered she had Carney Complex with potential Cushings Syndrome, which can become part of the Carney Complex.
I did some research around the condition to help me understand what this condition is and how I can help her. At the time I did the research there were only 500 cases worldwide and only 1 other child in the UK had the same diagnosis. There is only one specialist in the UK.
When discovering more about this condition, there were a few posts from adults who had been diagnosed and one story, in particular, scared me. This young woman in America wasn’t diagnosed until she was 20. After her diagnosis, she had received more than 25 surgeries. Her symptoms included kidney failure and she had had heart surgery. It was scary to think my little girl may have to go through this.
We live each day as much as we can, we grab every opportunity to have fun and make memories, our life is all about the memories and the good times.
Jessica was born with a heart murmur, which at the time was a risk to her condition and could have caused further problems, but just before Jessica’s 10th birthday she had an echo and we were told her heart murmur had healed which meant the risk of tumors was reduced. That was a massive relief.
As she’s got older and her hormones are kicking in, we were told she may need steroids to manage her hormones as it was believed she had Cushings Syndrome but thankfully there have been no symptoms of this so far. Cushings Syndrome can add to the condition and cause tumors in all her vital organs including the pituitary gland in the brain, as well as a need for steroids to manage the hormones in the body which in turn increases the risk of tumors.
We live every day with the knowledge that she can develop a tumor and need open heart/brain surgery at any given time. This affects our lives in the sense that I overcompensate and want her to be happy and relaxed as much as possible, as well as live her life the best she can.
We have several different hospital appointments each year, and for the last 2 years we are thankful it’s just been check-ups, and we are hopeful this will continue for as long as possible.
Our hopes and dreams for the future remain quite simple, to live each day to the best of our ability, with health and strength, to what the future may bring. We live for today and hope for the future.
About Chance Coaching CIC
Chance Coaching is a not-for-profit organisation which provides 1-2-1 life and mindset coaching to women from all backgrounds. Life Coaching teaches clients a new perspective on life and how to approach life with more positivity and to reach for the dream.
The profits and funding from our activities go towards providing coaching and emotional support to families with children with additional needs or disabilities.