31 Days of SMA: People With SMA Can Follow Their Dreams

From left, Tonje, Morten, and baby Gulla. (Photo courtesy of Tonje Larsen)

Day 6 of 31

This is Tonje Larsen’s (@rollin_with_tonye) story:

Hi, my name is Tonje. I’m 23 years old and was born with spinal muscular atrophy (SMA) type 2. I live in Norway, and I’m a mom.

My parents have always taught me that being in a wheelchair and living with SMA should not take the life you want away from you. That’s kind of what my life motto is. My fiance, Morten, says that was the thing he first fell in love with. We both are trying to do fun things like traveling and not letting my diagnosis get in the way. I’ve had so many people say, “How are you doing it?”

Once I’ve made up my mind and decided how to do things, I do them without looking back. I’m the first with 19% lung capacity with SMA in Norway to get pregnant. The doctors were shocked when I told them about it. My whole life I’ve dreamed about becoming a mom, and when I knew Morten was the one, we both wanted me to have a child early because we never really know the progression of my disease.

I felt I had limited time to be strong enough to carry a child. I’m sure I’ll be able to get pregnant again after my experiences. I actually got stronger, and my breathing got better. My health got so much better that friends I rarely get to hang out with noticed it as well.

On Oct. 18, I delivered Gulla in the 33rd week of my pregnancy. I was put under full anesthesia. Since she was born early, we had to stay at the hospital for three weeks. We were the happiest and proudest parents. She’s so strong now that I can’t hold her on my own, but with help, we make it work. I love playing with her, and every day is a day of joy and happiness.

As you see, I won’t let anything stop me from living the life of my dreams, and I hope people with SMA can follow their dreams as I did. I know it might be scary and hard, but in the end it’s all worth it.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.