Our 27 year old daughter Charity is
currently in a near locked-in state. We
are looking for answers, and hope for her
future.
Charity was a healthy young mother of two
children. She worked out regularly and had
no health issues. April 19, 2007 Charity
felt some numbness on her left side. An
MRI on April 23 showed something on her
brain stem. She was rushed to Omaha to the
Nebraska Medical Center where they did a
full spectrum of exams looking for
–stroke – tumor –MS –blood vessel
malformation –infection. April 27 they
did a stereotactic brain-stem biopsy.
NOTHING conclusive showed up in any of
these exams nor in any subsequent exams.
Charity’s health however continued to
spiral. Within 26 days from her first
symptoms she came near to a total
locked-in state on May 14 at Mayo Clinic.
She was only able to move her eyes and
very little of her head. Nothing else
moved. A few days later however Charity
twitched a thumb, then the twitching
became more frequent and consistent. She
moved other things. This encouraged
everyone and other treatments were tried
including a series of plasma exchanges.
Nothing has dramatically improved
Charity’s health, although the initial
steroid treatments seem to have held off
the heaviest impact of the neurological
deterioration.
She has been hospitalized at, Nebraska
Medical Center, Omaha Mayo Clinic,
Rochester Good Samaritan Hospital -
Kearney, NE Madonna Rehab Hospital -
Lincoln, NE BryanLGH East - Lincoln, NE
From what we understand since May 14 three
things are observable. 1. The brain stem
lesion has remained unchanged. 2. Charity
does not seem to have made significant
neurological declines nor advances, she
struggles at times with keeping clarity of
mind. 3. Charity’s greatest battle has
been secondary medical issues,
respiratory, hemorrhaging, weakness,
cramps, spasms, bed sores, abdomen issues
from the beginning, pain not always
understood etc.
The brain stem lesion remains A MYSTERY.
We have kept a daily journal on
Charity’s situation, along with photos
at a site dedicated to her, www.charitygeorge.com
As of today, Charity remains mostly
paralyzed. They have succeeded in having
her balance sitting during therapy, and
stand in a standing frame, but for the
most part she cannot sit up on her own,
nor stand. She cannot swallow, eat, talk,
or cough effectively. She can shake her
head and nod her head very consistently.
She can show some movement in most limbs,
although not consistently. These are all
things we hope she can improve one by one
but the future seems quite uncertain.
We do not want to give up on our daughter
but we have found there to be a lack of
research and understanding on how to
diagnose, treat, and rehab a young person
with a brain stem lesion.
Does you have any suggestions where we
could get cutting edge help for Charity in
diagnosis, prognosis, treatment, rehab?
|
Fairy*Godmother
Supporter
Joined: 11 Oct 2003 Posts: 1407 Location: , Georgia USA
Thanks: 57
Thanked:70
Hi Posted: 07-07-08 15:08pm
Please repost and give an update on
Charity. I just found this post today. 10
months have past. I do hope the good Lord
has blessed your family and Charity is
getting better day by day. I enjoyed the
website and the pictures.
