Craniofacial abnormalities are not as uncommon as one may think.
According to the World Craniofacial Foundation Web site, one in every 500 children has some sort of craniofacial abnormality, whether it be a cleft lip or palate or one of several genetic or birth disorders that cause the abnormalities. The Web site also states that craniofacial disorders affect more children each year than all childhood cancers combined.
With the commonality of the abnormalities, why do the previous statements come as a shock?
“It spans the gamut — it may be a minor abnormality to a very serious one,” said Sue Blackwood of Midlothian, vice president of the World Craniofacial Foundation. “Many children are hidden away — they’re not brought out in public a lot.”
The World Craniofacial Foundation, founded in 1995 by Dr. Kenneth Salyer, works under the mission, “to give help, hope and healing to people with craniofacial abnormalities and their families.”
“The foundation is dedicated to helping children with craniofacial clefting abnormalities. There is a child born every four minutes with a craniofacial abnormality and there are very few craniofacial surgeons around the world. We are called upon world-wide to facilitate and care for the very difficult craniofacial cases,” Blackwood said.
The World Craniofacial Foundation offers a resource for families or guardians of children with craniofacial abnormalities, providing medical contacts and funds for surgeries, medical bills and travel. Blackwood explained that many patients and their families or guardians must travel to other continents for medical attention. With multiple surgeries and extended stays for post and pre-operation care, the foundation often provides for apartments or homes for the families.
“We provide charity. Surgery is donated — we facilitate that. We provide a place for the patient or family to live and money for day-to day needs. We facilitate air travel or gas money,” Blackwood said. “Often they have to travel very long distance. We just help people get to the right doctor so their children can receive care.”
In 2003, the story of Mohamed and Ahmed Ibrahim, Egyptian twins conjoined at the head, captured the attention and hearts of Texans and America. Doctors performed a 34-hour surgery at Children’s Medical Center in Dallas to separate the twins.
“We are the group that brought in the conjoined twins from Egypt a couple of years ago,” Blackwood said. “At this time we’re assisting a girl from the Czech Republic and have other children from the Philippines, Mexico, Siberia. We’ve facilitated all these surgeries.”
The foundation also assisted in providing surgery for Tatiana and Anastasia Dogaru, conjoined twins from Romania who began the first day of separation surgery on Thursday in Cleveland.
“We were able to find someone who would separate those girls at no cost,” Blackwood said.
Although high profile cases such as Mohamed and Ahmed and the Dogaru twins help raise awareness for craniofacial abnormalities, the World Craniofacial Foundation hopes the Butterfly Boogie on Saturday, June 16, will help bring the reality of the abnormalities to light in North Texas.
Blackwood recruited Bambi Martin of Waxahachie to organize a race for the foundation as both a fund-raiser and a way to promote the foundation’s mission.
“This is a first-year event and fund-raiser that we are doing for the foundation,” Martin said. “They contacted me because Sue and I are good friends and she knew that I was a runner. Their event was to put on a race. It started out as a small thing, now hopefully it’s going to be a big event.”
Martin, who makes her debut as a race director with the Butterfly Boogie, became involved with the World Craniofacial Foundation as a volunteer and befriended Petero Byatakonda, one of the foundation’s surgery candidates.
“About a year ago I started volunteering for the foundation and befriended one of the children. We would go out once a week and do different things,” Martin said.
Petero, from a village in Uganda, has Crouzon’s syndrome. After 13 years of being beaten and shunned by children and adults in his village, his case was introduced to the World Craniofacial Foundation. Petero received a series of surgeries in Dallas.
“(Petero) and his guardian from Uganda were here for about seven and a half months. The culture shock is amazing. They didn’t know anybody and I asked Bambi if she would like to befriend this young man and the guardian. She took them in and entertained them and became a friend,” Blackwood said.
“The thing he wanted to do the most is ride a horse. So I took him horseback riding,” Martin said.
“Bambi took them horseback riding - they had never seen a horse. She set it up and they had the time of their lives,” Blackwood said.
With her experiences with Petero, Martin has jumped headfirst into planning a 5K and 10K and a Buggy Boogie (one-mile fun run/walk) that will attract those who like to run and those who want to support the foundation.
“We’re hoping for a thousand, but we have no idea what the turnout will be,” Martin said. “We are definitely hoping this goes off really well and grows bigger and bigger with each year.”
With experience running multiple marathons, including the Boston, New York and Chicago marathons, along with various races in the Dallas-Fort Worth area, Martin is consolidating her knowledge with her fellow runners’ in order to create a race that is both beneficial to the foundation and attractive to runners.
“This one in particular is going to be a family event. With this being the first year, this race isn’t going to make any money. It’s as much about awareness of the foundation and hoping people donate,” Martin said. “Running has grown immensely in the United States, but also the Metroplex. It’s a healthy thing, and this foundation is revolved around doctors and health. It’s just a way of getting the whole family out and enjoy a morning with food, games, music and exercise.”
The Buggy Boogie begins at 7:45 a.m. Saturday, June 16, at Reverchon Park in Dallas, with the 5K and 10K beginning at 8 a.m. in the same location. Those interested in participating can register at Luke’s Locker in Dallas or online at www.lukeslocker.com or at the store. Registration is $20 through June 9, $25 through June 15 and $30 the day of the race.
Race day activities will include balloon artists, face painting, caricature artists, music, food, drinks and a BoogieWear Booth.
The butterfly plays an important part of the foundation and the race, with butterfly logos on the T-shirts, brochures and Web sites.
“It symbolizes transformation for these children - we had a young girl who came here from a very long distance. She was 13 and she said all she wanted to do was be pretty enough to have a friend,” Blackwood said. “It is a transformation for them. The butterfly is perfect for us. It symbolizes new beginnings and hope for the future.”
For more information on the World Craniofacial Foundation, visit www.worldcf.org.
To volunteer during the race, contact Martin at firstname.lastname@example.org.
For volunteering opportunities with the World Craniofacial Foundation, call (972) 566-6669.
E-mail Mandy at email@example.com