McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome
These very talented students are raising funds and providing awareness for a child with Ehlers-Danlos Syndrome.
By Nora Olabi
McCullough Junior High School choir students raised thousands of dollars during their third annual pop concert benefiting a Woodlands-area family in need.
About $6,300 was raised from ticket sales and the silent auction at the Nancy Bock Auditorium on May 19, and the choir itself donated an extra $875. Connie Horton, the choir director, conducted 240 students in front of a crowd of nearly 400 parents and community members. They performed a variety of solo and ensemble music from jazz to pop to classical.
“It meant a lot for me personally for me to be able to do something for him because he is a friend, and I’ve known him for years,” Horton said
“I’m just so overwhelmed and appreciative of all the students and their hard work, to even consider us for that was amazing,” said Keith, who has taught at the district for 24 years and is the former choir director. “The amount that was raised was so amazing, so we’re so thankful to have been the beneficiary of the whole thing.”
Keith’s 17-year-old daughter, Brooklyn, suffers from a rare disorder called Ehlers-Danlos Syndrome, which is a genetic disorder that affects connective tissue, including joints, skin and blood vessel walls. Her connective tissue is so sensitive that gravity slips her joints out of socket. Brooklyn loves horseback riding, but the disorder has forced her to use a wheelchair.
Keith and his wife, Bari, take their daughter to physical therapy sessions several times a week and to doctor visits for different injections. But the Brumfields are using the benefit concert money to pursue a new therapy that they believe can help their daughter: Stem cell replacement therapy.
“It was something that we didn’t expect or ask for. Somebody got the word, and people started raising money. That’s what blows you away. We are very thankful to live here in the community,” Keith said.
The family put a down payment on the first stem cell treatment with Sugar Land-based Celltex Therapeutics. The first step will be to remove some fat cells from Brooklyn’s body in order to grow personalized stem cells in a laboratory. Bari expects to take her daughter sometime this week.
Once the stem cells are grown, Bari and Brooklyn will make the trip to either Guadalajara or Cancun for five to 10 days for the first treatment since it is not federally approved. Without the money raised from the benefit concert, Bari said the family would have been unable to pursue this treatment.
“God has provided this money every step of the way. It’s always just enough,” Bari said.
From installing an elevator in their house to buying a specialty wheelchair catered to their daughter’s condition, the Brumfields have heavily invested in their daughter’s well-being. Much of the cost has been out of pocket since they’ve exceeded their insurance coverage.
But McCullough Junior High School students aren’t the only ones to step up and help a teacher in need. The Woodlands High School Theater Club raised more than $5,000 during a benefit show in March, and the high school’s French club will host a benefit show at North Shore Park on May 22.
“Our dream of course is for her to walk again,” Bari said.
Want to know more?
Ehlers-Danlos Syndrome is an inherited disorder that affects connective tissue like joints, skin and blood vessel walls. Those with the disorder may have overly flexible joints. A severe form of the disorder can cause the walls of the intestines, blood vessels or uterus to rupture, according to the Mayo Clinic‘s site.
Watch Brooklyn’s personal testimonial on her brother’s Vimeo channel here:
The Woodlands High School Theater Club supports the Brumfield family as they pursue treatment for their child with Ehlers-Danlos Syndrome.
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