Main fundraiser photo

Running for Callie Anne

People are moved by all sorts of things. For me, it was a little baby girl by the name of Callie Anne that has moved me to pound the pavement to raise awareness for Apert Syndrome, literally. I will be running a half marathon in February and with every step I take, with your help, I will be raising money to help with medical expenses for this precious child as well as educate people on this rare genetic disorder. Callie Anne was born with Apert Syndrome and will require dozens of surgeries over the coming months. 13.1 miles will be easy right? It will be with the motivation I have found by supporting Callie Anne and her family.

Callie Anne Cook was born on November 30th, 2012 with Apert Syndrome. Her skull was permanently fused in utero in 3 places, her fingers and toes are fused, she has a cleft palate, as well as feeding and respiratory problems. Before she was 2 months old, she had her first surgery to put in a feeding tube so she can get the needed nutrition for growth. She will have at least 3 more major surgeries before she is 12 months old. In September, 2013 she will have a cranial vault remodel to reconstruct her skull in order to give her brain adequate room to grow. Her fingers and toes will be surgically separated with a 2 stage surgery which will take place in October and December. All of these major surgeries will be done in Dallas, TX by an internationally renowned craniofacial surgeon who specializes in Apert Syndrome. Callie Anne has a fighting spirit and is the kind of baby girl who captures the heart of everyone she meets! Her parents truly believe she was brought into this world to teach others about acceptance and the true meaning of God's love.

What is Apert Syndrome?
Apert Syndrome is a genetic condition caused by a random chromosomal mutation and is characterized by premature fusion of the skull, retruded mid face, fused fingers and toes, and many other medical issues that may or may not be present such as cleft palate, respiratory problems, and varying degrees of developmental delays. It is estimated that 1 in every 120,000-200,000 babies are born with Apert Syndrome, which averages to about 25 births a year in the U.S. People with Apert Syndrome will have an average of 27 surgeries in their lifetime to correct the abnormalities associated with the condition, most of which take place during childhood.

Organizer

Adria Goins
Organizer
Bossier City, LA

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