The other day, I met the cutest 4-year-old girl name A. She was wearing a little topknot on her head, sundress, sandals and even little earrings and best of all a big wide smile that revealed two missing front teeth. Within 10 seconds I was completely and madly enchanted by this kid.
A is missing ribs that protect her heart.
I met her at the office of her Orthotists who was designing a protective vest or what her mother calls, her Heart Protector so that when she goes to kindergarten in the Fall, she can interact with the other children and minimize the chances of severe injury.
A’s mom shared that the cause of the missing ribs and other complications that affect most of her internal organs, including her uterus, kidneys, and liver, is the result of a missing gene. All the specialists that A has been to say the same thing – they’ve never seen this before. Luckily there is a physician in Philadelphia who believes he can help A. and is working on some options. Before coming to see her Orthotist, A was wearing a baseball chest protector from Modells that her mom tried to modify to fit her.
A. and I chatted for a while. We both love the super pink color that she picked out for the vest, and when told her she was very “on trend” with her color selection, she smiled at me. A. told me about the string beans she’s growing in her backyard and I shared my love of pizza with broccoli on top. Then it was time for her to go.
A walked out of the office wearing a super pink vest with a large red abstract heart shape on the front to protect her heart from the world. As we waved good I could feel my heart ache a little with affection for this little girl and a little sadness for what her journey will hold for her. I found it a little ironic that the little one who has to protect her heart was able to pierce mine that day.
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