Hannah was born on May 16, 1995
with her twin brother Ben. He was always the big brother -
he was 7 pounds, 7 ounces while Hannah was a much smaller
at 4 pounds, 3 ounces. The first 18 months were a
discovery of issues ranging from cataracts and feeding
issues to photosensitivity and an inability to sweat.
Despite not meeting milestones and blazing her own trail
on the growth chart, Hannah was a happy, smiling little
girl. She enjoyed being around Ben and younger sister
Allison. She received speech therapy to try and
lessen her oral sensitivity. She received PT/OT - she
loved her therapists but hated doing the work.
She was always quick with a
smile for her Daddy and learned quickly that if she flung off her
glasses or hearing aids she got attention from her siblings or
classmates at her special needs preschool. She was a pretty well
child until her last year when she seemed to be less resistant to
illness and started having occasional seizures. In January 2000
she contracted pneumonia from which she wasn't able to recover.
She died peacefully with her parents on January 26, 2000. Our
sweet little girl who never said a word taught us so much about
love and priorities in her 4 1/2 short years. She loved and
giggled and cuddled and had us all wrapped around her tiny little
We miss her everyday. We are grateful to the other
CS families who generously share their sweet
children with us. Being able to hold another CS
child helps to bring back those full sensory
memories. Thank you for sharing! We love our CS
family and we are so grateful to Amy and Friends and
for facilitating opportunities to get together.
Hannah, Our little friend
won her fight against Cockayne Syndrome and is now free to run and
play in heaven.