FAQs about Cicily
(in plain non-medical, child-esque language)
What's that thing
around her neck?
It's called a trach.
It's a tube that goes into her wind pipe to help her breathe.
Does she eat?
She does eat. All her
food goes straight into her tummy through a feeding tube. She
doesn't have to chew and swallow her vegetables.
How does she hear?
Without her hearing aids she hears like you do if you plug
your ears. With her hearing aids on she
hears pretty much just like you.
Does she talk?
She says "yeah" and she uses her face and hands (sign
language) a lot to communicate.
Does she walk?
Nope. She uses a
wheelchair to get around.
Why does she smile so
much?
Cicily truly enjoys her life and all the things she gets to
experience. She loves making people
happy. She's not bothered or frustrated
by all the things she can't do, she appreciates all that she can do.
Does she understand
things?
She understands everything that any kid her age does. In preschool she learned colors, shapes,
etc. In Kindergarten she's learning about
adding, letters, etc.She also seems to understand many things that are only mysteries to most of us.
What does Cicily
have?
In Nov 2017 we FINALLY figured that out! Cicily has a gene POLR1C that for her made her body develop different facial features (Treacher Collins Syndrome) and a disappearing brain (leukodystrophy).
Does anyone else have
what she has?
Not that we or anyone else we've ever met knows of. If you think you may know someone - contact
us! Doctors know some people with her same gene that have TCS, and some that have leukodystrophy, but nobody with both.
Is what she has genetic?
We didn't think so. But just found out that it IS genetic. She got a recessive copy of the POLR1C gene from her Mom and Dad. A genetic tragedy or serendipity depending on your perspective.
Is she ever going to
get better?
After she dies and is resurrected she will be all better!Is she going to die?
Cicily should die before she fully grows up. Doctors aren't sure how her life will progress/regress. She is on hospice as of March 2017, so she'll likely die within the next few months.
What does she like to
do?
She loves to play with her sisters and be entertained by
them. She loves animals - her dog and
chickens specifically. She loves reading
books, feeding her chickens, going to
school, singing time at church, going down slides, listening to her music,
painting her toenails, being silly with her family and laughing, and many other
things. If you have any Qs, leave a comment or email me. I love to answer anything about my little girl.
