One of my favorite things is bragging on my people. And today I want to shout out to every person on the interwebs that I am SO STINKING PROUD of my friend KRISTEN BAUGHER!
Yep, that’s her.
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I can picture exactly where we were on a late summer day when Kristen told a couple of us that she was pregnant with her third kid. TOTAL surprise. [For everyone.] We screamed and dropped our jaws and encouraged her through the morning sickness and exhaustion that even though this child was not in her plans, God obviously wanted this kiddo born into this family and HE must have an even better plan than we could imagine.
Fast forward to the following spring when a phone call changed their lives forever. Their beautiful, slightly jaundiced baby girl, Emmery, was diagnosed with a life long genetic disorder, called Alagille Syndrome. The complications affect her liver, kidneys, heart, brain, spine and more. Read Emmery’s story HERE.
Since that day, Kristen and her husband Erik have had to learn what it means to parent a child with a serious medical disorder. The daily symptoms affecting her ability to eat, sleep and move, the frequent doctor visits, blood draws, and more procedures and tests than many of us have in a lifetime.
But Kristen found herself unwilling to let this diagnosis define her daughter or their family. She knew from day one that Emmery would look to her mom and dad to learn how to face Alagille’s, and how to find her own identity. And she didn’t like the labels being tossed around, like “mutation” or “abnormal.” Kristen wanted to spin the diagnosis on its head, and to make Emmery and other children with special medical needs feel worthy, special and WHOLE.
Throughout this last summer, Kristen was dreaming and scheming, showing us mock-ups and ideas of a new small business that was burning a hole in her heart. She wanted to sell clothing to EMPOWER and ENCOURAGE children and families. Not just kids with Alagilles, but all kind of other situations that get lumped under “special needs.” Much research was required to figure out how to bring it to reality, but you guys?
SHE DID IT!
On August 31st, Remarkably Rare Designs was launched into existence, and the products are flying!
I hope you will visit their website; follow them on Facebook: Remarkably Rare Designs; and on Instagram: @remarkablyrare.
An opportunity to help children and families feel empowered, beautiful and valued. And all inspired by this little person:
Emmery Rae