“Being pregnant with Little Miss Zoe was anything but simple. I’d already had a challenging, high-risk pregnancy with my twin boys, so I thought this one would be easy. But it wasn’t.
A routine anatomy scan advised of a 33% chance of Down syndrome. We did more testing, but the doctors gave us the clear.
Little Miss Zoe was born on October 4th, 2018. She was beautiful. She had a head full of thick hair, full lips, and a tiny little body – she was perfect! I always cherish the first few days before it got complicated.
On day five, Zoe was admitted to the NICU and diagnosed with failure to thrive. She had a feeding tube placed and was in the hospital for weeks. I stayed by her side and my husband took a leave from work to care for the boys. After many referrals, tests, scares, and an emergency surgery, Little Miss Zoe was eventually diagnosed with SLC35A2-CDG, an extremely rare disease caused by a genetic mutation. She’s the 49th person in the entire world with the diagnosis.
“Despite all this, she’s the happiest child I’ve ever met. She has the most infectious laugh. Everyone just adores her, including her brothers.”
The news brought out new, unrecognizable emotions – extreme shock, grief we couldn’t comprehend, and fear of the unknown. Because her diagnosis is so rare, we don’t really know what to expect. It also made it challenging for me and my husband to find support and other parents to relate to.
Today, Zoe is three years old and still feeding via a G-tube. She has epilepsy, cognitive visual impairment, global developmental delay, and many more uncertainties that require close and frequent observations and testing. The list of complications or health issues that can develop is exhausting. Nobody wants to see their child struggle, and everything is a struggle for Little Miss Zoe.
Despite all this, she’s the happiest child I’ve ever met. She has the most infectious laugh. Everyone just adores her, including her brothers. Strangers will stop me on the street to comment on how beautiful and happy her smile is. She’s very stubborn, too. As much as she’s not verbal, you very much know what she wants and when she wants it.
I try to look at the bright side of things. I call Zoe my little lemon because if life gives you lemons, you make lemonade."
.jpg)
