Source: Mile High News

Blind toddler could gain sight after overseas operation           

Hallie Kemp rummaged around in her play kitchen, offering a tiny toy spatula from the sink overflowing with miniature pots and pans.

"Hallie's spatula!" the 2-year-old announced proudly.

Hallie loves playing with toys that make noise, light up or have interesting textures, and when she hears a song, she can't help but bob and dance along.

Music, light and texture are Hallie's major learning tools. The toddler is legally blind because of an underdeveloped optic nerve and can only see some light from her peripheral vision.

Although her parents, Katie and Adam Kemp, have started labeling Hallie's favorite things in Braille, the couple hopes one day Hallie won't have to rely on touch and hearing to live her life. One trip to Thailand for stem cell therapy could improve Hallie's sight enough to look her parents in the eyes or one day even drive to her high school homecoming dance.

"We're hoping for the best," said Adam Kemp. "We can't expect that she'll get 100-percent vision; but if we don't do this, I don't want to regret it 10 years down the road."

The Kemps had heard success stories about children like Hallie who received umbilical cord stem cell therapy to help improve their sight. One nearby patient was Macie Morse, a Fort Collins teen who could see only outlines of shapes and had to hold books close to her eyes to read them. After traveling to China for a stem cell treatment using umbilical cord blood stem cells, she was able to see well enough to get her driver's license, Kemp said.

As the Kemps did more research, they became convinced an umbilical cord blood stem cell treatment would help Hallie see the things 2-year-olds should be able to see — her parents' faces, her neighborhood and her wiggly 9-month-old brother Carter. Yet there are two big downsides: the operation is not approved by the FDA and not covered by their health insurance, and the trip to Thailand to stay for the month-long treatment would cost the family about $50,000.

Getting the treatment

The couple immediately organized fundraisers and set up a Web site where people could learn more about their curly-haired child. They posted announcements about her first steps, her growth improvements and links to research and news about stem cell therapy. Donations suddenly poured in.

"We had people we didn't even know sending us money, saying things like 'I knew your dad 10 years ago,'" said Adam Kemp as Hallie snuggled in his lap and sang to herself.

The couple has raised about $30,000 and hope to have the rest by October, when they plan to make the trip.

After multiple tests and measurements, Hallie will undergo several treatments using stem cells from umbilical cord blood.

The stem cells are meant to target her Septo-Optic Dysplasia, a condition where her underdeveloped optic nerves cause her blindness. A second part of the condition causes pituitary gland hormone deficiencies, making her smaller than other children her age and requiring daily thyroid pills and hormone injections.

In March, President Obama signed an executive order repealing some of the Bush administration's restrictions on federal funding of human embryonic stem cell research.

"Research involving human embryonic stem cells and human non-embryonic stem cells has the potential to lead to better understanding and treatment of many disabling diseases and conditions," Obama said in the executive order.

The decision brought praise from proponents of embryonic stem cell research and disappointment from those who say using human embryos is morally wrong.

The Kemps said it was important for them to find a treatment using umbilical cord cells instead of human embryonic stem cells because they see embryonic cells as potential life.

After treatment, the Kemps can only sit back and wait for results. Stem cell treatment for Septo-Optic Dysplasia varies, meaning Hallie's improvement could be minimal or vast.

"Right now, she's so young, she can't really tell us what she can see," she said.

Hallie's world

The Kemps are itching to have the procedure done as soon as possible.

"Until you're three, your brain is still developing. It's better to do it sooner because there's more chance for improvement," Adam Kemp said.

Hallie's daily life is filled with toys and learning tools. She takes preschool classes with the Anchor Center, an early intervention education school for blind and visually impaired children.

Once a week, a music therapist visits to help her with rhythm and sounds.

"The music therapist has actually been really instrumental in teaching her to walk. She would be really scared, but the beat distracted her and she just started doing it," Katie Kemp said.

Hallie's parents are helping her getting ready for Braille by playing with texturized fabrics, pieces of pasta or bubble wrap, but her mom isn't worried about her ability to recognize objects with her hands.

"She'll reach into her Ottoman (toy box) and barely touch something, and she knows it's her tambourine," she said.

Learn more

To learn more about Hallie Kemp, or to donate to the Kemp family's treatment fund, visit www.hopeforhallie.com. Denver will host a Stem Cell Awareness seminar 2 p.m. Saturday, June 13 at Stella's, 1476 S. Pearl St., Denver. For more information, visit www.stemcellaware.com.