If your child was diagnosed with a rare, potentially fatal condition in the womb, would you make it your life mission to keep them alive?
When Katie Scott was just a few months pregnant, she learned there was a serious medical concern with the precious baby she and her husband Bobby had been patiently waiting for after struggling with fertility issues for many years. Instead of terminating her pregnancy as her doctors recommended, the couple decided to give their little girl a chance.
Harlow Jean was born in October 2016 with lissencephaly, a rare genetic disorder in which a baby’s brain is smooth and doesn’t develop folds, impacting neural function and mental development. While the condition can’t be cured or reversed and life expectancy varies depending on severity, there are treatments that can help, but of course, they are expensive.
In an effort to give her daughter the life and medical attention she deserved, Katie started selling t-shirts on Etsy to make extra money, and Hope for Harlow was born.
“Our girl deserved a fighting chance so we continue to have hope in her and though everything is so hard—being in and out of the hospitals constantly and worrying about seizures and her brain, her GI problems her gastrostomy tube infections and her actual mental state — I wouldn’t change the decision I made to keep her,” Katie tells Babble. “I truly believe Harlow is magic. That’s where her unicorn nickname came from and that’s where the majority of the ideas for the shop come from.”
Less than a year later, the Hope for Harlow collection has moved off Etsy and expanded to include jewelry, car seat covers, baby bows, and bibs, all created with love featuring whimsical and inspiring designs. Mommy-and-me t-shirts with messages like “Wine for me” for mom and “Whine for me” for baby, initial necklaces perfect for a new mom, toddler shirts emblazoned with a black glitter unicorn, furry felt Where the Wild Things Are crowns and bows are just a few of the items you will find on the website.
Not only are Harlow’s medical expenses being paid for one sale at a time, but her story is touching the world. Recently, Katie started a pay-it-forward fund where she makes shirts in honor of other disabled children with 50 percent of the proceeds going toward their respective families.
“I’m just a regular girl who believes there is good in the world if I can help just one person it’s worth it,” she says. “I try to be as brutally honest about our journey as possible simply because I know I’m not alone.”
Since Harlow’s birth, Katie has been suffering from severe postpartum depression. She hopes that by sharing her story, other women will find encouragement.
“I get messages all the time about how they are going through the same thing but they thought they were alone this is one of the many examples and this is why I’m sharing Harlow’s journey because it touches more lives then we could have ever imagined,” she explains.
While her company is successfully raising awareness for lissencephaly and parents in similar situations have reached out to her, Katie admits she feels paralyzed in the grieving process and hasn’t been able to communicate with them. “I hope to be able to connect one day because I know it would be so helpful and I wouldn’t feel so alone in it, but at this point I’ve got to let my mind catch up,” she confesses.
You can do your part to help Harlow Jean by making a purchase on the Hope for Harlow website. Whether you are shopping for yourself or a gift for someone else, there is no better way to give or receive than with hope.