Born in 2002, Luke’s mother, Melody, experienced a normal pregnancy with all of the excitement any expectant mother experiences.
Planning his room, buying baby clothes, tiny diapers and a crib, Melody and her devoted husband Rodney couldn’t wait for the day that they met the newest addition to their loving family.
Then, the unimaginable happened.
“When he came out he had a Port Wine stain from his waist to his feet,” Melody said in a recent interview. “His little puffy cheek, as he is now, is how he was as a baby.
“It was a shock. I don’t know how to explain it. I thought I had done something wrong when I was pregnant. I blamed myself. No one knew what he had. Doctors came in and out and no one had any answers.”
The child she had protected within her own body was born with an unimaginable disability; CLOVES syndrome.
She had done nothing wrong…it was simple genetics.
Though first diagnosed with Klippel-Trenaunay-Weber Syndrome, it was just this year that specialists realized he was one of just a select few children born with the extremely rare genetic disorder.
According to a website created by specialists in the field, CLOVES is a rare progressive overgrowth disorder, affecting approximately only 100 people worldwide.
The symptoms vary from mild soft-tissue tumors to other malformations that can encompass the spine and internal organs.
CLOVES stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi, Spinal/ Skeletal Anomalies or Scoliosis.
C is for congenital, which is something that exists at birth and develops during the first month of life.
L is for lipomatous, which regards an unnatural buildup of fat cells.
Most Cloves patients, according to the CLOVES Syndrome Foundation, present with a soft fatty mass at birth, often visible on one or both sides of the back, legs and/or abdomen.
O is for overgrowth, which means there is an abnormal increase in the size of the body or a body part that is often noted at birth.
V is for Vascular Malformations, a term used to refer to blood vessel abnormalities. Luke has many different issues with his blood vessels, however for different patients, symptoms can vary.
E is for Epidermal Nevi, which is the medical term for sharply circumscribed and chronic lesions of the skin and are benign by definition. These are often flesh-colored, raised or warty.
S is for Spinal/Skeletal Anomalies, and/or Scoliosis.
For Luke, one entire side of his body has grown at a much different and faster rate than the other and has resulted in speech, cognitive and motor skills delays.
His tiny arms bely his tough nature. He loves to ride on his golf cart and swings like the sky is no limit.
His smile, however, is something rare and infectious, as are his piercing blue eyes, which when focused on you, make a person feel special and truly gifted in being in his presence.
Talking about his favorite show Dora and his love of swimming, Luke showed extraordinary strength as his nurse came in to change an intravenous dressing.
Despite the extraordinary pain, which made him cry out, ensconced in his mother’s loving arms, he recovered quickly to talk about his favorite classes at school. Luke is currently a 4th grader at Richmond County Elementary.
“I like music class and the ‘smelly stamps’ from Mr. Washington,” Luke explained, adding that art classes were another of his favorites.
Although normally in school, Luke is currently suffering from a broken leg, precluding him from attending classes.
“We have been in the hospital nine or 10 times this year. He has been on some types of antibiotics since January,” his dad said. “This has been a bad year. His infections are just reoccurring over and over.”
Melody explained while each child suffering with CLOVES is different, Luke has one-sided overgrowth, seizure disorders, large blood vessels and fatty tissue and that everything is larger on the left side, from his brain to his teeth to his tissue.
“He is developmentally slow and doesn’t have oral skills like most kids,” Melody said. “On a normal basis he only walks a little bit. He has to wear special garments to get the fluids going. The most difficult part is that I can’t fix it, I can’t help it.”
She added that the school system has been wonderful in accommodating Luke’s special needs.
“He loves his speech teacher,” Melody said. “He likes the social part of it.”
Recently the Rappahannock High School Varsity and JV Volley Ball Teams played in Luke’s honor, holding a fundraiser with the help of the Booster Club and other local organizations. Additionally local churches, including Totuskey Baptist and Rappahannock Church of Christ have assisted in raising funds to help for Luke’s medical care. An anonymous donor also sent the family on a Disney vacation.
It is something that both Melody and Rodney said was touching and much needed.
“It has been a bad year,” Rodney said. “We know what we are dealing with and we just go day by day.”
Luke, however, just wants to get back to school, see his friends and learn.
“Yes, he is different, but he doesn’t think he is different,” Melody said. “He wants to be like any other kid. He just wants to play.”
“I love everybody,” Luke said.
It was a statement evidenced when his dad had walked into the house earlier.
Luke immediately kissed Rodney and asked him about his day.
“I love you, daddy,” Luke said in a clear, strong voice.
“I love you too, bud,” his dad replied, tousling his son’s hair.
For information on CLOVES syndrome, visit www.clovessyndrome.org. If anyone is interested in helping the Sisson family, please contact either Totuskey Baptist Church at 333-4855 or the Rappahannock Church of Christ at 333-9659. There is also a Facebook page, the Love For Luke Volley Ball Game.