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Molly was born on December 6th, 2002. We didn't know prior to her
birth that she had Apert Syndrome and, like most everyone with a baby who
has this syndrome, we were scared and in shock. After many doctor
appointments, we found out that Molly is on the 'mild' side of the
syndrome - at least that's what we have been told. She doesn't have a
shunt, a trach. respiratory issues, or any of the more common
treatments/conditions of the syndrome. We found out from one doctor that
usually the syndrome appears in one of two ways; severe head/mild hands or
severe hands/mild head. Molly has a mild recession of her midface as well
as type 1 hands (least severe). That still didn't stop one neurosurgeon
from telling us that she may never read a book. That proclamation was made
after glancing at a CT scan and saying that she is missing her corpus
collosum as well as her septum pellucidum. Well, needless to say, we
sought a second opinion and after obtaining a MRI, they confirmed that her
corpus collosum is fine. She is missing he septum pellucidum but,
according to the neurosurgeon, that part of the brain doesn't have any
real function and should not have an impact on her capabilities.
Molly had her first cranial surgery at 6 months old (forehead
advancement). She's had 2 hand surgeries to separate the index and pinky
fingers on both hands. She's also had tubes put in her ears. Molly crawled
at 10 months old, walked at 18 months and is now working on running and
jumping. Her coordination is a bit off as is her balance. Her most recent
assessment indicated that socially and cognitively, she's pretty much
doing those things that a 2 year old should be doing, however, her
physical assessment showed her in the 18-24 month range and her expressive
speech is delayed as well. She understands most of what we say so her
receptive language skills are awesome. She's an amazing little girl. She's
able to match pictures 100% of the time, she has 50+ words that she either
signs or says, has the most adamant determination, and has a wonderful
sense of humor.
Molly has two brothers - Liam who is 4 1/2 and Ronan who is 4 months
old - she should be well protected sandwiched between them!
She's our sunshine, our angel, and the light of our lives.
Patrick and Pattie Egan
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