Jayd Dell - Living with Friedreich's Ataxia (FA)

I recently stumbled across this beautiful girl on a blog post that her best friend, Raechel did on her, entitled My Best Friend Is Dying. It was such a moving story, not only because of how beautiful their friendship is but also beacuse how inspiring I found Jayd to be. There are so many people with terminal illnesses but not everyone has the attitude that Jayd has. I sent her an email to chat to her more about her disease and I asked her a few questions. 

We are all going to die, some sooner than others, but what's important is not how or when we die, it's how we LIVE. 

1. What is Friedreich’s Ataxia (FA) and when did it start to affect you?

Friedreich's Ataxia (FA is just a much easier name) is where the connection between the Cerebellum (brain that controls balance and coordination) and spinal cord is dying off. Resulting in a miscommunication with the nerves and muscles, so basically the brain doesn't read what your body is saying clearly and the other way around. I like to tell people it's like a broken telephone effect. So then the muscles get weak and everything is basically dying off since your nerves control your muscles and you lack balance and coordination. 

The thing about FA is that it is hereditary, from both parents AND there's only 25% chance of actually getting it. My full biological brother is fine however he is a carrier and needs to be careful when he wants children. He's 23 and name is Blake.  

I was always affected I guess but at 14 I had my first 'episode'. there is also no cure just treat symptoms. it is also progressive, meaning it gets worse in time until one day you have heart failure - doctors can't give a time but on average people with FA live till 30-40

2. What were your first symptoms and how did you feel when you were told that you have FA?

The symptoms start at any age, when I started walking my parents noticed something wrong and doctors just said that I'm clumsy and I will grow out of it. As I got older things got worse i had slight scoliosis (curvature of the spine) and would tire easily in the day. my coordination was also getting worse, like throwing and catching a ball. Then when I was 14 I was very bullied at school so I faked sick for about two weeks - but my mom knew I was faking, she's not that naive - and then I started getting really sick and I called my mom to help me to the bathroom and her response was 'Jayd, get off your ass and go' and I told her I couldn't move my legs. I was so thin that my ankles and thighs were almost the same size. The scoliosis was so bad that my body was basically in a twist and my shoulders were uneven.

"My walk made me look drunk - I was teased so much at school." 

The constant fatigue, even when I wasn't active, everything was a mission and the scoliosis which got worse and worse, that I was in a brace and once I was diagnosed I had a spinal fusion to correct the curve - I have had 3 back surgeries, between 15 and 17 and am fused from the bottom of my neck to my coxicks. 

When I found out I felt like utter shit, I felt like I was going to die the next day because that's all you think when you get diagnosed with any diesease. The way i found out is a story on it's own and I will post it on my page but basically my dad told me .... over the phone. Once I got the call I cried and screamed for 30 minutes, my mom had guests over and I wanted to be alone, after my cry i went to the dining room, sat down with my pasta and said 'Okay, I've had this for 14 years already so now that it has a name I'm not going to let it affect anything' and ate dinner as if it was a normal night with my family. 

3. How does FA affect you in every day life?

Everyday I'm losing more and more independence which is weird because you're supposed to gain more independence the older you get. Things like making tea, cutting steak, tying shoelaces, picking up things. I am wheelchair bound now, so everything I am doing is at that level also and I sit which leaves no space for movement on it's own. I don't drive either so friends who do drive need to know to fetch me, drop me at home and look after me, but at times becomes tricky. I have a caregiver but she doesn't drive she helps me on a day to day basis at home. It goes as far as I need to make sure if I go somewhere there no stairs - more than 5. At my boyfriend's house, he has to help me on the toilet or in the bath, even to change. Everyday there is something harder but you learn your ways.

 "I've been wheelchair bound for 4 years and I can't remember what it feels like to walk."

4. What are some of the treatments you do?

There is exercises and stretches your physio gives you to do at home, which should be taken seriously but no one really does. I do hydrotherapy, which is physio in the pool and water aerobics but in January my moms boyfriend of 20 years decided to leave so my mom has gone to get a job and now there's just no time or money to take me to phyiso - this is apart of losing my independence

5. What is your worst thing about FA?

My worst thing... The pain. The pain I'm in is constant now, even when I sleep, my legs are always cold because of lack of circulation and that causes pain. Every bone, muscle and joint aches in winter and sometimes just always. I am always in pain, sometimes more than others and sometimes its spasms and sometimes it bone .... it varies everyday. Lately (3 months) it's all day everyday in my whole body. I live in bed.

6. Before you got sick, what did you want to do with your life?

Before I got sick I wanted to be an actress, I made it to SA championships and I won awards and everything, and I couldn't finalize the last competition because I got ill. Then I wanted to major in psychology and specialize in disables, English and philosophy. I just wanted to broaden my knowledge so much, but I didn't finish school, when I was 20 I dropped out, I didn't want to be in school at that age, which I regret now, because I'm not allowed to add unnecessary stress by going back to school because it can make me ill. But sometimes I wish I could.

7. How has FA changed your life's plan, what are your new goals?

I don't think I ever had a plan, at 14 you do what everyone does you know? at 14 you have no worries. Now, with FA you don't plan ANYTHING! You can commit to things because it changes everyday. 

 "I truly believed I was going to be one of the best in the world." 

At 13 I would practice my speech for the Oscars in front of the mirror with the hairbrush and fake tears, haha! As for new goals, I just want to experience as much as I can, surround myself with people who bring out the best in me and make me positive. I have an amazing support system which really helps. I have a bucket list and there's about 250 things that I want to do, and the list just keeps growing. 

"Another big goal is to finish and publish my book and to change as many lives as I can while I can."

8. What has FA taught you?

Wow, I could be here for days... I'm an extremely stubborn person and it's taught me to actually ask for help when needed. It has taught me to be humble, I am not bitter or think that the earth owes me something because of my situation. 

"I've learnt what true happiness feels like and it's amazing."

It's taught me who's important in my life and who isn't, including family. But mostly I've learnt that life is the biggest gift of all, that there is heaven in everyday and you should never take anything for granted. Living everyday to the fullest is the most important thing, for me.

9. What do you want people to learn from reading your story?

One of my biggest passions it to help people broaden there minds, keep them open and make them see things in a new way. I want people to understand how amazing life is and how it should be enjoyed, I feel with my story that that is what I can do. The more exposure I get the more awareness there is on FA since it is such a rare illness.  A lot of doctors don't even have knowledge on it. 

"There's a saying that goes 'I'm not here to make a living, I'm here to make a difference' and that's exactly how I see my life."

10. What keeps you positive? 

Everything! I enjoy finding beauty in everything and having faith in what drags me down. 

"Face the sun and your shadows will fall behind you" 

For me my positivity comes from the smallest of things to the biggest. Tea, literature and my animals make my life happy. My friends, my family and my whole support system keeps my spirits high. My boyfriend, as hard as it is he always reminds me that I'm not doing it alone. My mom, the biggest heart and soul in the world. She's my hero - even if we just lie in bed with a movie on, those little things just lighten my life up. Then there is music and live performances, from the ballet to watching my favorite bands and dancing the night away with my friends. Being reminded that the treasure of today is more beautiful than yesterday!

Such a beatiful girl and a beautiful spirit! We have a lot to learn from this amazing human and I hope some of those lessons were learnt reading this! 

Read more about Jayd on her blog These Wheels