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FARAFARA Cure FA

Sarah Skelton

Name: Sarah J Skelton

Age: 37

Where do you call home? Cairns, QLD, Australia.

Education: Teritary entrant for Bachelor of Management & recipient of Diploma in Management at Tech. My husband and I own and operate a tree felling business. We have for 13 years currently, I’m the office girl!

What is your relationship status? Do you have children? Been married to Malcolm 16 wonderful yrs. We have 2 boys, Nathan and Jarrod, they are 16 and 14 respectively next month. We have lived in the same single storey, purpose built wheelchair dwelling/house for 13 years. It’s close to the shops and bus stop so I power chair everywhere.

What's a typical day for you? Depends which day, every day has a certain routine but each day is different. Ie Today I got the bus to town on my  power chair, went  to Motor Rego and paid a bill, bused back, home for weekly cleaner and sailing later.

How long have you known you are living with FA? In grade 7 (1989) I was tested for scoliosis, when I had a back brace fitted a few months later the orthopaedic guy referred us (Mum and I) to the neurologist cause of my gait. In 1990 at the age of 12 I was diagnosed with Friedreichs Ataxia based on my symptoms.

Are there any others with FA in your family? Nope.

Describe your transition from walking to walker/wheelchair. Describe an adaptation and/or transition you have had to take due to living with FA. In general the transitions weren’t too difficult, in hindsight I wish I’d pushed myself to walk longer. It was a safety issue in the end and having to rely on other people for balance & stuff, I did drive a car with hand controls for a bit. I use my power chair outside the house. I love my independence. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I had pneumonia when I was 30, it was a huge wake-up to change my life for the better, start exercising and eating healthy, no downward spiral here. I began doing hydrotherapy with a support worker, one to two days per week. Started gym also in 2010, my gym support/friend Elsa is wonderful, she created both my gym and hydrotherapy programs. Mal and I got my hand cycle custom made from the U.S in mid 2011. I have done a 30km ride to raise funds for FARA. I am currently training to ‘pose’ in the local bodybuilding competition, hopefully a platform to bigger and better things. Also a healthy diet is crucial to maintaining an active life, I eat Paleo, can’t recommend it enough.

Do you have any hobbies or special interests? I have been enjoying adaptive sailing recently but gym is my passion. Also any activity with Mal and the boys, 4WDing & camping.

What is a good trick to make daily life easier? I carry my cell phone with me everywhere I go also FORWARD PLANNING is the key, cause everything takes a little longer to do I plan everything so I achieve my daily goals/tasks.

When FA gets you down, what do you think/do to feel better? FA doesn’t get me down, it’s frustrating at times, but it never gets me down. Working out at the gym alleviates my frustrations.

What is one way living with FA has POSITIVELY affected your life? Always have a CAN do attitude!! ‘I’ll give it a go’, ‘I’ll certainly try.’ I have always been patient, with having FA doubly so.

What is a favourite motivational quote of yours? When life served us LEMONS, we made LEMONADE. (well, it’s my hubby Mal’s quote), but it suits our family well. We are connoisseurs of lemonade.

What is piece of advice that someone with FA has given you that encourages and inspires you? Life will be bumpy and have many hurdles (road blocks) but never let that deter you from what you SHALL achieve, persistence and patience will get you there in the end.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? “as above” You need to be surrounded by positive people who are willing to support & encourage in all endeavours you wish to pursuit.

What is the first thing you want to do when a cure/treatment to FA is found? If by some miracle I woke up without FA tomorrow I would go for a long run on the beach.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? Just like a dog can have fleas, fleas can’t have dog as Mal says FA does not define who I am. I am Sarah, a mother, a wife, a sister, a daughter, a passionate gym attender, keen sailor, wheelchair user and I have FA.

Tell us a little more about you….. Our family unit is quite unique. We have many stories which define who we are, my FA is just a small part of ‘us’. Mal has a traumatic ABI (Acquired Brain Injury) due to being hit by a car at 8 and also an assault when he was 23. Jarrod, our youngest has a non-traumatic ABI due to lack of oxygen to the brain brought about by two open-heart surgeries as a baby. Nathan is the typical 15 year old teenager, what can I say?! Every day is a challenge.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!

 

 


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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