Noelle Lowe of Andrews walks with her son, Brarron who has dwarfism.
Brarron Lowe is a happy 5-year-old boy.
He loves football, especially the New York Giants, enjoys baseball and if you get near him you will be challenged to a round of arm wrestling. He also enjoys swimming, video games and Legos.
He acts like most other 5-year-old boys.
But, he has something very few children have — Cartilage–hair hypoplasia (CHH) — a rare form of short-limbed dwarfism.
People with cartilage-hair hypoplasia have unusually short limbs and short stature from birth; they grow to an average adult height of 40 to 60 inches.
Brarron’s mother, Noelle Lowe, said right now her son is about the size of a 3-year-old.
The disease has also caused him to have a weak immune system. For that reason his doctors would not sign off on Brarron attending a public school. Instead, he is a student at Andrews Christian School.
“He needs a well-controlled environment where everything is sanitized,” Lowe said of the decision to choose that school.
Lowe said the typical routine for Brarron includes a monthly infusion which is administered in Charleston, two different antibiotics, the use of an inhaler twice daily and a shot two times each week.
Lowe, an employee of St. James-Santee Family Health Center on Highmarket Street, said the battle her son faces has been an “emotional ride” for herself and Brarron’s father, David.
They found out Brarron had the disease when Lowe was 36 weeks pregnant.
While the noticeable symptoms of the dwarfism are expected to last his lifetime, Lowe said a surgery planned for this June is expected to help his immune system.
The bone marrow transplant will take place at the Medical University of South Carolina and the donor will be Brarron’s 2-year-old sister, Kaylin.
“She is a perfect match,” Lowe said.
She said the process will begin in early June with a round of testing. After that, Brarron will have to undergo chemotherapy sessions.
Lowe estimates Brarron will be in the hospital for six months because there will be two to three days between transplants and a long recovery period.
“The transplant is not as big of a deal as the chemo will be,” she said.
Some fundraisers are already taking place and others are planned. Beef ‘O’ Brady’s in Georgetown is collecting donations.
A recent barbecue dinner was successful as more than 365 plates were sold.
On March 19, the Lowcountry Thunder will sponsor a fund-raiser. To participate, call 833-3030.
A bank account has been set up at South Carolina Bank and Trust for anyone who wants to donate.
Contributions can be made to the Lisa Lowe Brarron Foundation.
Lowe said Brarron does have insurance but the donations will go to help pay for things the policy does not cover. Plus, she said, there will be housing expenses in Charleston while her son is hospitalized.
“I just want to thank everyone for all they are doing,” she said.
By Scott Harper
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