The woman who can’t smile: Meet the mother with a permanent poker face caused by rare genetic condition
Canadian mother Alexandrea Comstock, 26, has facioscapulohumeral muscular dystrophy and was friendless until she adopted her pig, Hammy
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A woman with a permanent poker face caused by a debilitating genetic condition was smiling on the inside when she married the man of her dreams in a fairy-tale ceremony with her beloved pet pig as their ring bearer.
Suffering with facioscapulohumeral muscular dystrophy (FSHD), in her early life, Alexandrea Comstock, 26, says she was “friendless” and struggled with crippling anxiety after being “quacked” at and called “duck” by bullies, because her rare genetic condition means she has big lips, an arched back and cannot smile.
But she had the last laugh when she adopted a pig called Hammy in 2012, who became her support animal and best pal, and fell in love with finance student Mark Comstock, 24, after meeting online in April 2019 – going on to tie-the-knot on October 19 2021.
Recalling her unusual ceremony with 50 guests drawn from friends and family, Alexandrea, of Lethbridge, Canada, who has a daughter, Grace, six, from a previous relationship, said: “It was an incredible day, I was so excited.
“All I ever wanted was to be married and walk down the aisle and I didn’t think I’d be able to.
“Sadly, Hammy went for a nap, but I was so happy she was there with me.”
She added: “I adopted Hammy, who is now 10, when I was just 16 because I was struggling mentally and hadn’t been diagnosed yet with muscular dystrophy.
“I had no friends growing up. All I ever wanted was a pig, so when Hammy came, we were best friends.
“Mark even proposed by attaching the ring to Hammy, who walked over, and then he got on one knee. Of course, I said yes!
“I needed her to be with me at my wedding and, thankfully, as she is recognised as my support animal, even Covid couldn’t stop us!”
Now surrounded by animals, Alexandrea has adopted two more pigs, Smokey, five, and Corn, two, as well as “countless” cats.
And while she has rescued them all, she said: “It feels like they’re rescuing me.”
The love she receives from her pets has also given her the confidence to become a regular presence on Instagram, where she often posts selfies, which grabbed Mark’s attention before they met.
Since first enjoying a pizza together in April 2019 they have been inseparable and share a passion for video games and reality TV.
Alexandrea said: “I think what struck me first was how good he was with my daughter, and just how kind he was.
“He had no obligations as we had only just met, but he was always willing to help.”
She added: “He always has the biggest smile, too. I think he smiles for the both of us.
“I never expected to make it past 18, because I was so depressed and didn’t think life was worth living, so meeting him was like a fairy-tale.
“It was so surreal, and I felt so in love.”
Without a proper diagnosis throughout her childhood, Alexandrea struggled at school where, unable to run, throw or even smile like the other kids, she was often bullied.
Doctors had suspected conditions like scoliosis, where the spine twists and curves. But it was not until 2016 that she was diagnosed with FSHD, a muscle-wasting genetic condition which affects one in every 20,000 people in the UK according to the NHS.
Eventually likely to become wheelchair-bound, the condition resulted in lumbar lordosis, making the back curve excessively and causing foot drop, where it is difficult to lift or move the foot and toes, as well as affecting facial muscles so she cannot smile.
Recalling years of schoolyard bullying, she said: “I didn’t know what was wrong with me, but, because of the way my face was and my arched back, people used to quack at me and call me a duck.
“I always felt different growing up, I couldn’t do anything other kids could do. I couldn’t run, I couldn’t throw. I couldn’t put my arms around my head.
“I had anxiety and panic attacks throughout school.
“And people always thought I was mean because I could never smile.”
Experiencing periods of acute depression, it was adopting Hammy that finally gave her hope.
She said: “At the time, I was so isolated and so alone.
“Hammy made me happy. The change in my life was pretty immediate. My mental health improved dramatically.”
She added: “I’d never had a friend before her and I didn’t think I had a future.
“That all changed with Hammy.”
In late 2014, with her so-called scoliosis causing her daily issues, Alexandrea booked an appointment at the Caleo clinic in Alberta, Calgary, to enquire about corrective surgery on her back.
Following various scans, surgery was put on hold as she was pregnant with Grace and she did not return to the clinic until the summer of 2016.
And, following a consultation with a neurologist in June, she was diagnosed with muscular dystrophy.
She said: “I was so relieved to find out and finally have an answer.
“But then I felt so alone, as no one could relate to what I was going through.”
Then working as a graphic designer, Alexandrea realised how serious her condition was as her neurologist told her she would have to quit her job and she was told she would receive £1,140 a month as part of the Assured Income for the Severely Handicapped (AISH) programme in Canada.
But even more heartbreaking than losing her own independence was the discovery that Grace had childhood onset FSHD, as she had passed the genetic condition on.
She said: “I see myself in my daughter a lot, all of her struggles, and it really hurts.”
She added: “But when I was told FSHD was genetic, I was also told there was a 50 per cent chance of me passing it on.
“My big fear after my diagnosis was not seeing Grace grow up.
“But while I know I will lose my ability to walk at some point, that doesn’t mean I will die or be a bad mum.”
Now suffering from extreme fatigue and sometimes even sleeping for three days, as her condition deteriorates, Alexandrea remains determined to stay strong for Grace.
She said: “I can’t brush my hair anymore but, thankfully, my husband does that for me.
“I wish I could pick my kid up, but I can’t either.”
She added: “Watching her grow up, I see so much of myself in her and I know that while her life will be difficult she will always have someone she can relate to.
“I am watching her live through the same steps I did.
“Luckily, whatever the future holds for me and my health, my heart is full because I know I’m surrounded by love.”
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