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Mother optimistic after 3-year-old receives stem cell treatment in China
Originally published November 26, 2009
By Susan Guynn
News-Post Staff
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Photo by Bill Green
Scarlett Birkmire, 3, and her mother, Rachel, play on the floor of their Frederick home. Scarlett, blind since birth, has complex health issues that slow her development.
When 3-year-old Scarlett Birkmire crawls from the living room to the sunlit kitchen, or reaches her hands to get a favorite toy off a chair, her mother, Rachel Birkmire, is filled with hope.
Blind since birth, Scarlett has complex health issues that include schizencephaly, a rare brain condition that results in developmental delays, inadequate production of thyroid and growth hormones, and diabetes insipidus.
But the most challenging condition is septo-optic dysplasia, an underdevelopment of the optic nerve that left Scarlett blind.
"Usually if you have (SOD) you have two or three of the other (conditions Scarlett has)," Birkmire said. The other issues are managed with medication. "(Blindness) affects how she is going to live the rest of her life," Birkmire said.
Through a worldwide online support group of parents who have children with all or some of the conditions Scarlett has, Birkmire learned about a promising stem cell treatment that has been somewhat successful in treating various conditions, including SOD. Birkmire took a year to research the procedure and the company that provides the stem cells before committing to seeking the treatment for her daughter.
The long application process confirmed Scarlett was a candidate for the treatment "because her optic nerves were attached and present and not diminished," Birkmire said. "That meant she had potential for regeneration with the stem cells."
The biggest hurdle was that it would require going to China for the treatment -- a trip that would cost about $40,000.
"That was the most difficult part," the mother said. "We didn't expect it to be as difficult as it was. It took a lot of creativity."
Area restaurants held fundraising days for Scarlett, and she received general donations through Scarlett's website, www.hopeforscarlett.com. About $5,000 was raised through "a whole lot of yard sales," Birkmire said. "A lot of people donated items for the yard sales. We held one every weekend for nine months" in the parking lot of a former business on South Jefferson Street in Frederick , across the street from her home. "It was painful. We had to lug everything back and forth."
In the weeks before the final payment was due, Birkmire said she was still several thousand dollars short, which relatives helped her meet through loans.
Finally, on July 16, Scarlett, Birkmire and her mother, Robin Birkmire, made the 20-hour flight (plus layovers), departing from Washington Dulles International Airport to Qingdao, China, with layovers in California and Japan.
Arrival in China
The family had accommodations in a two-bed hospital room in the People's Hospital in Qingdao, one of six hospitals in China offering the treatment. None of the doctors or staff spoke English, but the hospital did provide interpreters.
Scarlett received the first of six intravenous stem cell treatments a few days after they arrived. The IV was attached to a port, usually in Scarlett's foot, and the treatment lasted about an hour.
"We tried to schedule it during her nap time," Birkmire said. "The most painful part was getting the IV port in."
Scarlett also had intense physical therapy sessions. "They encourage it for people with physical conditions to work the muscles targeted by the stem cell treatment. In Scarlett's case it was because it was part of her routine (at home)," Birkmire said.
Two days after the first treatment, Birkmire and her mother noticed that when they went outside, Scarlett would shield her eyes, indicating to them she had light perception. "When we would go for a walk, she was looking up and around instead of looking down," which she typically would do. "She recognized when lights would turn on and off." Scarlett also became fascinated with a child's MP3 player with a small blinking blue light, holding the blinking light up to her eye for long periods of time.
"We spent so much time testing her, to see what she could do and couldn't do," Birkmire said, noting they videotaped some of Scarlett's reactions. "Movement was the next thing we noticed. I started to wave at her; now she waves to herself." Scarlett's crawling improved "because she had a purpose to moving. When you do things like put a toy somewhere, without making any sound or mentioning it, and she finds it ... it's impressive."
Birkmire said there were a lot of emotional moments during their 36-day stay in Qingdao.
Since returning home, Birkmire said Scarlett is a bit more active and has wanted to eat more. Until recently, Scarlett was on a liquid diet. Now she can eat pureed table food, similar to stage 2 or 3 baby foods. "In stores, she reaches for items on shelves, which she never did before. If it's within 2 feet, without hesitation, she finds what she wants."
Remaining optimistic, Birkmire knows it's difficult to test or assess just what level of vision Scarlett may have. Before treatment, Scarlett's right eye "wandered a lot. Now she can focus and (her eyes) can move simultaneously, something impossible for her to do before," Birkmire said, something Scarlett's ophthalmologist also observed during a recent eye exam.
Scarlett's endocrinologist "was happy with what she saw" when Scarlett grabbed the doctor's examination light, Birkmire said.
"There's very little testing they can do (at this age) to test her vision. And she doesn't always cooperate."
Since treatments, Scarlett has become more independent, Birkmire said. "If you assist her, she can stand for about 10 minutes." At age 2, Scarlett had only recently learned to sit on her own and could not crawl.
Birkmire said Scarlet seems to be drawn to objects that are yellow, like the yellow square of carpet that she always goes to in the children's reading area of the C. Burr Artz Library in Frederick . At night, she seems to notice the glow-stick lights placed around her bedroom, according to Birkmire. "She never liked having her hands touched at all. Now she holds my hands." Birkmire said the stem cells will continue to regenerate and grow for six to nine months after treatment. "After nine months, they say what she's gained is what she will have" and the mother plans to continue fundraising and return to China for a second treatment in a couple of years. "Honestly, we are beyond happy with what she has gained," Birkmire said. "All I hoped for was some improvement, for her to be more independent. ... We are pleased."
http://www.fredericknewspost.com/sections/art_life/display_features.htm?StoryID=98262
Originally published November 26, 2009
By Susan Guynn
News-Post Staff
</I>
Photo by Bill GreenScarlett Birkmire, 3, and her mother, Rachel, play on the floor of their Frederick home. Scarlett, blind since birth, has complex health issues that slow her development.
When 3-year-old Scarlett Birkmire crawls from the living room to the sunlit kitchen, or reaches her hands to get a favorite toy off a chair, her mother, Rachel Birkmire, is filled with hope.
Blind since birth, Scarlett has complex health issues that include schizencephaly, a rare brain condition that results in developmental delays, inadequate production of thyroid and growth hormones, and diabetes insipidus.
But the most challenging condition is septo-optic dysplasia, an underdevelopment of the optic nerve that left Scarlett blind.
"Usually if you have (SOD) you have two or three of the other (conditions Scarlett has)," Birkmire said. The other issues are managed with medication. "(Blindness) affects how she is going to live the rest of her life," Birkmire said.
Through a worldwide online support group of parents who have children with all or some of the conditions Scarlett has, Birkmire learned about a promising stem cell treatment that has been somewhat successful in treating various conditions, including SOD. Birkmire took a year to research the procedure and the company that provides the stem cells before committing to seeking the treatment for her daughter.
The long application process confirmed Scarlett was a candidate for the treatment "because her optic nerves were attached and present and not diminished," Birkmire said. "That meant she had potential for regeneration with the stem cells."
The biggest hurdle was that it would require going to China for the treatment -- a trip that would cost about $40,000.
"That was the most difficult part," the mother said. "We didn't expect it to be as difficult as it was. It took a lot of creativity."
Area restaurants held fundraising days for Scarlett, and she received general donations through Scarlett's website, www.hopeforscarlett.com. About $5,000 was raised through "a whole lot of yard sales," Birkmire said. "A lot of people donated items for the yard sales. We held one every weekend for nine months" in the parking lot of a former business on South Jefferson Street in Frederick , across the street from her home. "It was painful. We had to lug everything back and forth."
In the weeks before the final payment was due, Birkmire said she was still several thousand dollars short, which relatives helped her meet through loans.
Finally, on July 16, Scarlett, Birkmire and her mother, Robin Birkmire, made the 20-hour flight (plus layovers), departing from Washington Dulles International Airport to Qingdao, China, with layovers in California and Japan.
Arrival in China
The family had accommodations in a two-bed hospital room in the People's Hospital in Qingdao, one of six hospitals in China offering the treatment. None of the doctors or staff spoke English, but the hospital did provide interpreters.
Scarlett received the first of six intravenous stem cell treatments a few days after they arrived. The IV was attached to a port, usually in Scarlett's foot, and the treatment lasted about an hour.
"We tried to schedule it during her nap time," Birkmire said. "The most painful part was getting the IV port in."
Scarlett also had intense physical therapy sessions. "They encourage it for people with physical conditions to work the muscles targeted by the stem cell treatment. In Scarlett's case it was because it was part of her routine (at home)," Birkmire said.
Two days after the first treatment, Birkmire and her mother noticed that when they went outside, Scarlett would shield her eyes, indicating to them she had light perception. "When we would go for a walk, she was looking up and around instead of looking down," which she typically would do. "She recognized when lights would turn on and off." Scarlett also became fascinated with a child's MP3 player with a small blinking blue light, holding the blinking light up to her eye for long periods of time.
"We spent so much time testing her, to see what she could do and couldn't do," Birkmire said, noting they videotaped some of Scarlett's reactions. "Movement was the next thing we noticed. I started to wave at her; now she waves to herself." Scarlett's crawling improved "because she had a purpose to moving. When you do things like put a toy somewhere, without making any sound or mentioning it, and she finds it ... it's impressive."
Birkmire said there were a lot of emotional moments during their 36-day stay in Qingdao.
Since returning home, Birkmire said Scarlett is a bit more active and has wanted to eat more. Until recently, Scarlett was on a liquid diet. Now she can eat pureed table food, similar to stage 2 or 3 baby foods. "In stores, she reaches for items on shelves, which she never did before. If it's within 2 feet, without hesitation, she finds what she wants."
Remaining optimistic, Birkmire knows it's difficult to test or assess just what level of vision Scarlett may have. Before treatment, Scarlett's right eye "wandered a lot. Now she can focus and (her eyes) can move simultaneously, something impossible for her to do before," Birkmire said, something Scarlett's ophthalmologist also observed during a recent eye exam.
Scarlett's endocrinologist "was happy with what she saw" when Scarlett grabbed the doctor's examination light, Birkmire said.
"There's very little testing they can do (at this age) to test her vision. And she doesn't always cooperate."
Since treatments, Scarlett has become more independent, Birkmire said. "If you assist her, she can stand for about 10 minutes." At age 2, Scarlett had only recently learned to sit on her own and could not crawl.
Birkmire said Scarlet seems to be drawn to objects that are yellow, like the yellow square of carpet that she always goes to in the children's reading area of the C. Burr Artz Library in Frederick . At night, she seems to notice the glow-stick lights placed around her bedroom, according to Birkmire. "She never liked having her hands touched at all. Now she holds my hands." Birkmire said the stem cells will continue to regenerate and grow for six to nine months after treatment. "After nine months, they say what she's gained is what she will have" and the mother plans to continue fundraising and return to China for a second treatment in a couple of years. "Honestly, we are beyond happy with what she has gained," Birkmire said. "All I hoped for was some improvement, for her to be more independent. ... We are pleased."
http://www.fredericknewspost.com/sections/art_life/display_features.htm?StoryID=98262