[blindkid] What do you think?

Patricia Renfranz dblair2525 at msn.com
Sat Oct 25 02:55:14 UTC 2008


Dear friends, 
Here is an article from the top of the front page of my local newspaper. For
some reason, maybe because it appeared at the time of Caroline's birthday
(13th!!), the tone of the article really got to me. At the bottom is a
letter (had to be less than 200 words) I sent to the editor. I am sending it
to the list to see what people think, am I overreacting, etc. I am NOT
sending it in order to provoke discussion of the parents' motives or of stem
cell research in general. And thanks to Carrie and Marla for their support.
Pat

Parents raising cash to take baby for stem cell treatment in China
By Lisa Rosetta
The Salt Lake Tribune
Article Last Updated: 10/20/2008 10:09:01 AM MDT
TOOELE - Kenidee Benton only knows her parents by the pitch of their voices
and the unique contours of their faces.
    Born with optic nerve hypoplasia, a congenital condition that causes the
underdevelopment of optic nerves, the 11-month-old girl lives in the dark.
    Blind from birth, Kenidee recoils at the tough, spongy texture of
polystyrene foam and the gritty feel of Cheetohs. She cries at the sound of
rustling plastic bags, or outbursts of laughter, or the piercing squeal of a
vacuum cleaner.
    Tony and Tenille Benton say Kenidee, their only child, has opened their
eyes to a kind of happiness, love and pain they never knew before. Now, they
dream of helping their bubbly little girl to see - with overseas treatment
using adult stem cells.
    After her diagnosis, Kenidee's American doctors gave her young parents
little reason to hope.
    "[The doctor] said it cannot be treated, that she would probably not be
able to see," said 19-year-old Tenille Benton. "She'd have to use a cane and
use Braille . . . there's nothing that they would be able to do."
    The news was devastating. "There were a lot of tears when she was
diagnosed," said Steve Strickland, Kenidee's grandfather.
    That was before the Bentons learned about an experimental treatment
thousands of miles across the world - one that other parents of children
with optic nerve hypoplasia (ONH) says works.
    At the Beike Biotechnology Clinic in Hangzhou, China, parents have told
Kenidee's grandparents that their children have been injected with multiple
courses of umbilical stem cells in their spines and, as a result, regained
some of their vision.
    "I think the theory is they inject the umbilical stem cells into the
child and it floods the optic nerve with stem cells," Strickland said.
"Hopefully it promotes some new growth and healing and improves the ability
of the optic nerve to do its job."
    Children who reportedly couldn't see were, just 24 hours after their
first round of treatment, able to follow a light. "It was just amazing,"
said Angie Boyer, Tenille Benton's older sister.
    At least one doctor, Shalesh Kaushal, an eye specialist at the
University of Florida, has called the ONH children's results "provocative."
    Still, he and other doctors - including Kenidee's physicians in Utah -
are not ready to condone the treatment, which has not been proven safe or
effective. Specialists at the Moran Eye Center in Salt Lake City have only
agreed to evaluate Kenidee, both before and after she receives the stem cell
therapy, her family said.
    With no other treatment options, however, the Bentons say they're
willing to try. The possibility that their daughter may someday see is too
alluring - and worth the $60,000 to $75,000 they say they'll need to raise
to take her.
    Fundraisers are already in the works: bake sales, yard sales, golf
tournaments, car shows and raffles. So far, they've rounded up $2,300, most
of it collected from donation jars scattered around the city in grocery
stores and gas stations.
    "The more you start advertising," Strickland said, "the more people come
out of the woodwork and want to help."
    The Bentons will be the latest in a string of Utahns who have made the
long and expensive trek to the communist country looking for help.
    Many see it as the last place on earth where their loved ones have a
chance to be well again - a place where stem cell research has transcended
the politics and strict regulatory requirements hampering its progress in
the U.S.
    "I think it's still such a political hot potato in the United States,"
Strickland said. "Obviously anyone who wants to have stem cell treatments
has to go out of the country."
    In May 2007, that's just what Bob and Eva Brehm did. The Park City
couple took their then 39-year-old daughter Dena Brehm Gennerman to
Shenyang, China, where she received injections of stem cells in her spine at
the 463rd Hospital of the Chinese People's Liberation Army.
    Dena suffered a traumatic brain injury in 2005 when the Egyptian tour
bus she was on rolled. Since the treatment, her father said, Dena better
recognizes people and seems to be more aware of her surroundings. She smiles
and laughs more, and has regained some mobility on her paralyzed right side.
    "She didn't start talking or walking or things of that nature, but we've
seen gradual improvements," Brehm said. Whether her progress can be
attributed to her stem cell treatment or other treatments, however, he's
unsure.
    But he added: "I would always doubt myself it we didn't do the trip."

How to help
A fund for Kenidee Benton, "Eyes for Kenidee," has been set up at Heritage
West Federal Credit Union in Tooele. A Web site has also been set up by her
family: helpkenideeseehiscreations.com.

The difference between embryonic and adult stem cells
Adult stem cells are more developed than embryonic stem cells, which are
extracted from days-old embryos. Adult stem cells can be gleaned from bone
marrow, umbilical cord blood, aborted fetuses and tissues throughout the
body. Studies suggest they retain some ability to transform. Such cells from
bone marrow, for example, can become skeletal or cardiac muscle cells. That
means they could be injected into hearts to repair tissues damaged by a
heart attack or heart disease.



Dear Editor,
I appreciate the dedication Kenidee Benton's family has in seeking to
improve her eyesight. However, I must address the portrayal of blindness in
the article about her treatment:
 
      My daughter's diagnosis of blindness felt like a tragedy. Like the
journalist, I mistakenly thought my baby was living in the dark. I did not
understand that knowing me by my voice and touch was no worse than knowing
me by sight, it was just different.
 
      Braille and the long cane are not ³have to² curses; they liberate
people like my daughter with literacy and independence in traveling. My
daughter has blind role models--teachers, mathematicians, mountain climbers,
and parents--who are living full lives. While there are special challenges,
she has an active childhood and a future limited only by her own work ethic
and ambition. 
 
      The tragedy of blindness is that my daughter will have to struggle
more against the low expectations of others than she will her lack of
eyesight. I hope the community will learn it is unnecessary to view my
daughter with the pity gratuitously invoked in this article. Vision is a
wonderful thing, but happiness and fulfillment are not dependent on it.
 
Patricia Renfranz
Secretary,
Utah Parents of Blind Children
--
dblair2525 at msn.com
801-582-2293 







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