My family are true superheroes! When I was diagnosed my parents and older siblings were the first ones to decide that we were not going to take this lying down, we were going to fight this together! When it comes to an individual having a rare disease the entire family live it too. I am lucky to have quite a big family and we are all extremely close! I have two loving and supportive parents who have always taught me to give everything a go. I’m a lot like my dad in many ways. I have an older sister [Michelle] who is very protective and encourages me to follow my dreams. My older sister is married to an amazing man [Roger] who became part of our family immediately. My older brother [Trevor] is always incredibly positive and encouraging and I know that he will always have my back. My older brother is also married to an encouraging and supportive woman [Joanne]. I am very lucky to be an aunt to three little humans [Hayden, Olivia, and Zachary], who have taught me a lot about unconditional love as they have never really seen the wheelchair. Lastly but most definitely least is my incredible twin sister [Jade], who is brave, beautiful, and genuinely the most caring person that I know. When you are a twin you immediately compared with each other. This is difficult at best at times but being compared to someone who is often the center of attention because they are sick, I cannot imagine is extremely difficult! None of my siblings have ever complained about having to help out with me because we are family and we will get through everything as a team.
When my twin sisters started to this is and achieves the milestones expected as a child my parents realized that there was something wrong. This is when I was taken to a specialist and was diagnosed with Spinal Muscular Atrophy. I cannot quite imagine what it was like to receive this kind of news and what it was like to tell your other children. A perk of being so young was that I didn’t fully understand what was going on, I was just being a child. There were many difficult times throughout my childhood, especially as I’d get pneumonia-like once a year. Our family always got through these difficult times with humor and fun! A couple of fun memories that come to mind are like when Trevor and I set off the alarm in the pediatric ward because we thought that it was a light switch. I remember when Jo put chuckles through the holes in my oxygen mask and moved my head around to try to get them in my mouth like a game. These times often helped us to make the most of the bad and scary times.
I am so lucky to have an amazing and supportive family who helped me to fight when I couldn’t do it alone. I love you guys so much!
“The most important thing in the world is family and love.”John Wooden