Something that I hold near and dear to my heart are children. It breaks my heart when children have to go through trails and pain that most adults have never experienced. I wish I could take it all away for them.
I recently met Mallory. She is a sweet, sweet little girl with so much spirit and love.
After genetic testing, Mallory was diagnosed with type 1 Pfeiffer Syndrome. This means her skull bones fused prematurely before birth. This syndrome also causes fusion of the fingers and toes as well as respiratory issues and delays in development. Only about 1 in 100,000 people are affected by Pfeiffer Syndrome.
So far, Mallory has had surgeries to place a g-tube, a tracheostomy, a posterior cranial distraction and three syndactyly release surgeries (giving her fingers). She is likely to have another surgery in the next year to make room for her brain to grow due to her fused skull bones.
She just happens to have Pfeiffer Syndrome. Which doesn’t define her. I wish everyone knew that. Their illness DOESN’T define them. It is especially hard with children because we are their voice. It is up to us, as adults, their parents, non parents, siblings, strangers, who ever. Do not outcast children who have an illness or issue. They want nothing more than to be a normal kid. And they have nothing but love to give.
PS. Mallory’s Mom is one badass Momma. She has 6 children (5 boys and 1 girl – Mallory). She still manages keep her sanity with all the hustle and bustle of her household, medical appointments, school, etc etc etc. You go girl!
Follow her Facebook page for regular updates here at Mallory’s Way!
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