Carly’s journey with Kemper
Tell us a bit about your family?
We are a family of 7 living in Tauranga. I am a full time student, in my final year of studying to become a Nurse. Anthony (dad) is a store manager at Rebel Sport and together we have three sons are Whairiri (6), Ged (7) and Kemper (11). Also the boys have their Aunty and a dog.
How did you get involved with Cure Kids?
When Anthony started working at Rebel Sport 13 years ago he became involved with Cure Kids and took part in the Auckland to Queenstown $10 Challenge. Last year when our son Kemper was diagnosed with Friedreich’s Ataxia (FA) Cure Kids heard about our story and reached out to us. Cure Kids gave Kemper the opportunity to take part in some fun campaigns and events like the 2017 Red Nose Day Campaign and the Ticket to Hope event in Queenstown. This gave Kemper a sense of belonging and he realised that he had the ability to inspire others to get involved with Cure Kids.
What has been the most challenging part of this journey?
There have been so many challenges on this journey. In the early days of diagnosis the biggest challenge was teaching Kemper how to stay positive and motivated when we knew that there is no cure or treatment for FA. At night Kemper would lay awake in bed fearful and upset. I decided that every night I would lay with him in the dark and he had to tell me 3 negatives and 3 positives from that day. When he told me the negatives I would ask him how it made him feel or what could he do better next time or just say “yeah! That totally sucks!” And then quickly move on to the positives. After a month or so he began to find more positives than negatives so I knew he had learned how to cope with those negative thoughts and feelings.
How has it impacted your family and life?
It has impacted our family in a number of ways, both positive and negative. Initially the diagnosis overwhelmed us with grief and it felt as though we were mourning the loss of the life we had envisioned for Kemper. I went and saw a counsellor because I felt like I was never going to get past the grief stage and then Anthony and I did some counselling together. We soon realised that everyone has their journey in life and this is ours. Kemper will face more challenges than the average person but he will still have an incredible life. Overall the impact this has had on our family has brought us closer and made us stronger and we’re inspired by Kemper to live life to the fullest.
Your family, and Kemper are so brave, how do you stay strong through the toughest of times?
Tough times for our family at the moment are when we see Kemper have a fall and seeing how upset he gets because he knows it’s part of the disease. When he falls I look at him rolling around on the floor and I remind him that he plays tackle rugby and I’ve seen him take harder knocks than that on the field and he realises I’m right and he soon gets up and carries on. Kemper’s motto is fall down 7 times get back up 8 so we stay strong with humour and lots of cheesy positive quotes.
What is the most important thing for your family?
Humour! Laughter is the best medicine I’m fortunate to live with a bunch of comedians so there’s no shortage of laughter in our family.
If you could have one wish this Christmas, what would it be?
I wish there was a cure for FA.
What is one piece of advice you would give to other parents / families going through a similar thing?
Set some goals. Whether it be fundraising for child health research, a special family holiday or an event to raise awareness for your child’s condition. Having something on the horizon to work towards can help you to keep moving forward and focussed on something positive.