A woman with a rare condition has revealed doctors warned her she would never be able to have children – but she has beaten the odds to welcome her two daughters.
Tonje Larsen, 24, was born with Spinal Muscular Atrophy (SMA) type two—a rare condition that causes progressive muscle weakness.
She has just 19% lung capacity and very little movement in her body and needs to have personal assistants and carers with her at all times.
While she and her partner Morten, 30, have always wanted children, doctors warned her pregnancy would be “suicide”.
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Despite everything, she was able to conceive and carry two girls – two-year-old Gulla and six-month-old Kornelie – but she says trolls don’t believe she is fit to parent them and doubt her husband’s love due to her additional needs.
“People don’t want me to be a mum and don’t think I’ll be a good parent,” Tonje, from Sandnes, Norway, told NeedToKnow.co.uk.
“People often assume my assistants are my daughters’ mums.
“No one thinks I’m the mum, even though they sit on my lap and talk to me.
“People also think there’s something wrong with my brain or with my fiancé – but why can’t he love me like anyone else?
“I get very sad sometimes and I feel unworthy.
“I know they don’t know how I live, but I just get very frustrated. It’s like I can never be good enough.
“Most people are just not informed about the life I have and don’t understand.
“It’s very sad sometimes but I have learned to not bother.
People have even made comments towards Tonje and her husband.
She said: “They say things like ‘He sure ate his vegetables’ and ‘now he has three babies to take care of.’
“I’ve even been told: ‘It’s so egoistic to make disabled kids when you are disabled’.
“Again, it just makes me sad and frustrated.”
Due to her condition, Tonje said doctors warned her against having children naturally.
She said: “The risks [throughout pregnancy] were innumerable; blood clots, lack of oxygen, lack of nutrition, infection, and permanent loss of muscle strength.
“My doctors were very afraid.
“But we decided to go against the doctor because we knew that it was possible and we knew that it was now or never.
“As I am constantly getting weaker and might be too weak in the future.
“I had great health at the time and it was a perfect time.
“We got a lot of new opinions from other doctors and they took care of me very well.”
After researching online and finding other people with the same condition, Tonje made the decision to go ahead.
She said: “On Facebook, there is a group with lots of mums around the world with SMA.
“People that were more sick than me had a successful pregnancy, so I thought, if they can, I can.
“We did genetic testing on Morten to make sure that he didn’t carry the SMA gene.
“We only had to try for months, and then I fell pregnant.
“My first pregnancy was very easy and I had a lot of energy. My lung capacity even went up to 25%.
“The second pregnancy was very different. I was tired all the time.
“In the first trimester, I was even too tired to drive my wheelchair on my own.
“Luckily, it got better, but by the end, I struggled to sleep because of breathing problems.
“I was so happy and excited to see my babies on every ultrasound and it was comforting to see that everything was fine.
“Both of my girls were delivered by C-section in week 33 and have no health issues.”
Tonje’s and Morten’s families were supportive of their decision to have children, and while they faced negativity online after they shared their pregnancy journey, Tonje is determined not to let it get her down.
She said: “I’m proud of living a life without limits.
“I wish people would accept that a disabled life is not a bad life. Life is what you make it.
“I sit in a wheelchair but I do most of the things other people do. Many think that we don’t have a life but that’s completely untrue.”
“I want to show people that they can even when people say that they can’t. Nothing is impossible with the right resources and help.”
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