KRISTIN BAUER
Crista Haight-Fenton hugs her nephew Baen Hurst, 5, early on Saturday morning, April 2 just before the Hurst family left for Minnesota for another round of surgeries necessary to treat Baen and his brothers Bryce and Brock for Hurler Syndrome.
KRISTIN BAUER
Crista Haight-Fenton hugs her nephew Bryce Hurst, 5, early on Saturday morning, April 2 just before the Hurst family leaves for Minnesota for treatments necessary to treat Bryce and his brothers Baen and Brock.
KRISTIN BAUER
Casey and Brian Hurst, of LaGrange, administer a dose of Keppra and Zantac to help with their son Brock's seizures and heartburn just before leaving for Minnesota. In Minnesota, Brock will be able to receive necessary treatments for Hurler Syndrome.
KRISTIN BAUER
Brian Hurst fastens his son Bryce's, 5, safety belt early on Saturday morning, April 2, as the family leaves for Minnesota for treatments necessary to treat Bryce, Baen and Brock's Hurler Syndrome.
KRISTIN BAUER
LaGrange twins Bryce and Brock Hurst, 5, have endured several surgeries intended to improve the use of the boys’ hands. The boys will undergo another surgery this summer to help combat atrophy of their muscles.
KRISTIN BAUER
Baen Hurst, 5, and his twin brother Bryce work on writing the letter "H." The boys have Hurler Syndrome, which makes writing all the more difficult for the boys to master.
KRISTIN BAUER
Bryce Hurst, 5, gives his little brother Brock, 2 mos, a kiss on the cheek while the boys are at physical therapy at the Cleveland Clinic, in Berea. The G-Tube and Broviak Tube are both something that Bryce used to have to help with Hurlers. Both of the boys have Hurlers.
KRISTIN BAUER
Bryce Hurst, 5, holds a rubber band board that he works with at physical therapy as he listens to his twin brother, Baen, practice singing the alphabet at the Cleveland Clinic Therapy Center, in Berea. The boys are constantly in physical therapy to help with their motor and speech skills, as well as hand motions because of Hurler Syndrome.
KRISTIN BAUER
Baen Hurst, 5, shares a laugh with his speech therapist Lisa Magee, while at the Cleveland Clinic therapy center, in Berea. Hurst was laughing about some of the words he had to connect on the flash cards that were drawn during speech therapy.
KRISTIN BAUER
Bryce Hurst, 5, shows off the snake he cut out from a piece of brown construction paper to his speech therapist Lisa Magee. Although making a snake from ordinary construction paper would not be challenging for most children, for Bryce this craft project is challenging and requires the use of hands, which have been greatly affected by Hurler Syndrome.
KRISTIN BAUER
Bryce Hurst, 5, works with his physical therapist Beth Boughton while at the Cleveland Clinic Therapy Center, in Berea. Hurst is improving the dexterity of his hands while drawing shapes in the shaving cream spread on the work table.
KRISTIN BAUER
Casey Hurst holds her son Brock, who also has Hurler Syndrome. Casey just learned Brock would be able to have a potentially life-saving treatment, including a cord blood bone marrow transplant surgery, this summer.
KRISTIN BAUER
Casey Hurst examines her youngest son, Brock's Broviak tube and g-tube. Brock is just 2 mos. old, and already has endured several surgeries to help him as he suffers from Hurlers.
LaGrange twins Baen and Bryce Hurst, 5, were born with a rare genetic disease called Hurler Syndrome that has no cure. Despite this diagnosis, the boys are able to read, write, count and attend pre-school. These things did not come easy: Several life-saving surgical procedures and daily therapy sessions have made this possible for the boys.
A LaGrange family adapts as their fifth son is born with a rare disease, Hurlers, that two of their other sons share. Hurler syndrome is a genetic disorder that affects the way long chains of sugar molecules are broken down for disposal within the body. Both Brian and Casey Hurst are carriers of the recessive gene for Hurler syndrome, which they did not know until after the twins’ diagnosis.
Because of Hurler syndrome, the twins have thick gums; an arched palate; rounding of the lower back; coarse facial features; ear infections; the inability to straighten their arms; the start of claw hands; low muscle tone; heart conditions; breathing problems; difficulty swallowing; a weak voice box and wind pipe; and distended abdomens. Along with the marrow transplant the twins received, the boys — Brock joins his brothers on these trips now, too — all receive enzyme replacement therapy each Wednesday at the Cleveland Clinic.
Doctors inject the enzyme into the spinal cord in an effort to stop or slow the neurological deterioration. So far, the treatment seems to be working.
The twins turned 5 on March 3 — a medical miracle, the family believes. “They are starting to see they are different,” Casey said. “At school, they were trying to trace their hands and it was hard because they do not have perfect hands.” Five days after their birthdays, the boys had surgery to reverse the effects of carpel tunnel syndrome and claw hands. Now they both are in casts.
“They are doing well,” Casey said. “They still need help with eating, drinking and going potty. And, they can’t color, paint or write. They know that the casts will be coming off and that their hands will work better.”
Brian, who works for Hurst Builders, a family-owned and operated company in Cleveland, said the twins do well for the most part, but the disease takes its toll. They hurt, and they take the maximum dose of ibuprofen each day. Casey credits the endless hours of therapy the boys receive as the reason they are doing as well as they are. In the fall, they will attend Keystone Elementary School as kindergarten students.
For more, visit The Chronicle-Telegram.
(Text, Melissa Linebrink)