Trolls say I’m a bad mum for having kids despite my rare condition but I beat the odds to raise my girls
DOCTORS warned a woman with a rare health condition that 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, which causes progressive muscle weakness.
She has just 19 per cent lung capacity and very little movement in her body, and needs to have carers with her at all times.
While she and her partner Morten, 30, have always wanted kids, experts reportedly said getting pregnant would be “suicide”.
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, said.
“People often assume my assistants are my daughters’ mums.
“No one thinks I’m the mother, 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.”
Tonje said she knows deep down that it’s simply because strangers are “just not informed” about her way of life, so they don’t understand she is a great mum.
While it upsets her, she has “learned to try not to be bothered”.
It does, however, cut deep when people make comments about her partner.
“They say things like, ‘He sure ate his vegetables’, and ‘Now he has three babies to take care off’,” she said.
“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 medics warned her against having children naturally.
“The risks [throughout pregnancy] were innumerable; blood clots, lack of oxygen, lack of nutrition, infection, and permanent loss of muscle strength,” she said.
“My doctors were very afraid, but we decided to go against them 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, so it was a perfect time.
“We got a lot of new opinions from other doctors and they took care of me very well.”
The couple also did lots of research online, finding other mums with SMA around the world.
“People that were more sick than me had a successful pregnancy, so I thought, ‘If they can, I can’,” Tonje added.
Morten underwent genetic testing to confirm that he didn’t carry the SMA gene (which would increase the chances that their children would too) – then they began trying.
It only took a couple of months, and Tonje, who had “a lot of energy”, found pregnancy “very easy”.
“My lung capacity even went up to 25 per cent,” she said.
But things took a turn when she fell pregnant with Kornelie.
“It was very different,” the mum-of-two said.
“I was tired all the time. In the first trimester, I was too tired to even 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.”
‘I’m proud of living a life without limits’
Tonje pushed through, and both babies were delivered by C-section at 33 weeks, happy and healthy.
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.”
What is spinal muscular atrophy?
SPINAL muscular atrophy (SMA) is a genetic condition that affects an estimated one in every 100,000 people worldwide.
It makes the muscles weaker and causes problems with movement, meaning sufferers often get around by wheelchair.
It is progressive, so it gets worse over time, but there are treatments to help manage the symptoms.
Typical signs of SMA include:
- Floppy or weak arms and legs
- Movement problems – such as difficulty sitting up, crawling or walking
- Twitching or shaking muscles (tremors)
- Bone and joint problems – such as an unusually curved spine (scoliosis)
- Swallowing problems
- Breathing difficulties
There are several types of SMA, which start at different ages. The main four are:
- Type 1 – develops in babies under six months old (the most severe)
- Type 2 – appears in babies aged seven to 18 months (less severe)
- Type 3 – develops after 18 months (least severe)
- Type 4 – affects adults (only causes mild problems)
In most cases, a child can only be born with SMA if both parents carry the gene.
If two parents with it have a baby, there’s a 25 per cent chance their child will have SMA, 50 per cent they will carry the faulty gene, and a 25 per cent chance they won’t have SMA or be a carrier.
There is no cure, but SMA symptoms can be treated with exercises, feeding tubes and dietary changes, braces or surgery for the spine, and medicines that target the faulty genes.
Source: NHS