With their traditional good looks and mischievous smiles, it’s easy to see how Charlie and Milo McConnel have won over the internet.
But the 3-year-old twin brothers don’t have a clue they’ve become darlings on social media, where they provide inspiration to tens of thousands around the world and have helped raise awareness about Down syndrome.
The boys have more than 21,000 followers on Instagram, where their “Chuckles and Meatloaf” handle is a throwback to nicknames their parents used when the twins were infants. They have
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Charlie and Milo both have hypothyroidism, meaning their thyroid levels are lower than normal. This is a pretty common condition in kids with Down syndrome, but is also easily managed. The boys have a little dose of thyroid replacement first thing each morning as part of our routine. We don’t even hardly think about it – it’s just a simple thing and it’s our normal. . We see the endocrinologist every 6 months or so to monitor the boys. Before each appointment they have to have their blood drawn so the doctor can review the results with us at their appointment. . Typically Charlie and Milo do pretty well with blood draws. They don’t love them, but they also don’t come unglued. And with playing in the hall before hand and plenty of snacks and a little toy afterward, it’s only a minor inconvenience for us. . Of course the boys charmed everyone at the hospital before and after. The world is their parade route. 😂 . Cute shirt cred goes to @specialneedsgames . #downsyndrome #twinswithdownsyndrome #nothingdownaboutit #t21
Julie McConnel, their mother, said she originally started the Facebook page right before the twins were born as a way to provide updates to family and friends. She found another reason to use the platform as the boys got older.
“I just wanted it to be more of a way to share, ‘This is our life; and this is what it’s really like to grow up and have twins in your home with Down syndrome,’” she told TODAY. “Because that’s what I wanted to know when I got the diagnosis — what is this life really, really, really like? I don’t just want to see rainbows and butterflies and miracles every day.”
It was social media that helped McConnel after she first learned she was pregnant with twins who had Down Syndrome. Although she connected with members of her local Down syndrome association in her Boise, Idaho, community, McConnel relied on encouragement from people she met online, particularly a family in Scotland who, like her, had fraternal twins with Down syndrome.
She now hopes her boys and their social media pages provide similar comfort and reassurance to others.
“I have these children who are so remarkable and so unique and so special. I feel like I have them for a purpose and that I could be for someone else what these twins in Scotland were for me. Pay it forward, right?” she said.
Like most 3-year-olds, the boys can be a handful. Charlie, who was a pound bigger at birth, is the more physical of the two. He was the first to walk and jump. He loves playing with any kind of ball and to sumo wrestle his dad.
Milo, who spent three weeks in the neonatal intensive care unit after needing surgery to repair a kink in his small intestines, initially had trouble feeding. It took him longer to sit, smile and walk, but now he’s caught up to his twin brother — and even surpassed him when it comes to sign language, which he loves to use.
“We always say that Charlie’s our athlete and Milo’s our scholar. Those are their two distinct personalities,” their mother said.
McConnel, 47, and her husband, Dan, 48, also have four older children, including two still at home — a 5-year-old son and an 18-year-old daughter.
McConnel has likened having fraternal twins with Down syndrome to winning the lottery because “it’s so rare and remarkable.” But she readily admits she didn’t always feel that way.
“When we first got the diagnosis, we didn’t feel like it was a lottery win, obviously. We were afraid and terrified and concerned and didn’t know if we could handle the responsibility,” she said. “Unless you have a lot of experience in your life with people with Down syndrome, it can really be a blow because that unknown is scary. You feel like you’ve lost the future you imagined you were going to have.”
But through education, and help from social media, she was able to shift her mindset.