CRESTVIEW — A family faces an unforeseen move to Houston, and increasing expenses, following their 5-month-old daughter’s diagnosis with a rare medical condition.
CLOVES syndrome — short for Congenital, Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/Skeletal/Spinal anomalies — is so rare, in fact, that Madison Gatlin is one of about 150 people worldwide diagnosed with the disorder.
“It is a vascular malformation of the lymphatic system,” Joni Gatlin, Madison’s mom, said. “Her system is put into overdrive on fluid production, which makes her look like a miniature Hulk.
“As a matter of fact, that’s what she’s going to be for Halloween,” Gatlin said, referring to the Marvel Comics character.
The family must move to Houston, so Madison can receive treatment unavailable in Crestview and be near her grandparents.
Being from a single-income family, with Madison’s father, Kyle Gatlin working offshore, the family has started a GoFundMe.com account to cover transportation, moving and insurance deductible expenses.
They hope to raise $5,000. As of this writing, 21 donors have contributed $1,945.
“Joni has the biggest heart of everyone I know,” family friend Tina Bannon said. “She was always the first to donate for other people, and now she needs help.”
The Gatlins’ church, Mosaic Church of Crestview, raised $1,252 at its Oct. 11 service, during which a fifth of the offering was presented to the family.
Joni Gatlin said she and Kyle were told during the 15th week of pregnancy that their child had a problem.
“The doctors say they think it may be genetic,” Joni said. “So one to two weeks after she was developing, this is when it happened. She was born like this, it wasn’t just after she was born.”
Monday, Joni and Madison Gatlin flew to Houston, where the girl will be fitted for compression garments at Texas Children’s Hospital, one of the few hospitals in the country that treat CLOVES patients.
“Madison has the majority of her upper body and arms filled with lymphatic fluid that is unable to drain back into her bloodstream which has caused cystic masses to develop in these areas,” Joni explained on her GoFundMe page.
Gatlin said the garments, coupled with medication to reduce fluid production, will allow the girl to grow so she can receive needed surgery when she is about 1½ or 2 years old.
“My heart goes out to this family,” Crestview real estate agent Jamie Mitchell stated in an email. Mitchell and Rai Des Granges of ERA American Real Estate are handling the family’s home sale.
“They’re a really nice family, but they’re really struggling,” Mitchell said.
WANT TO HELP?
Donors wishing to help the Gatlin family meet their medical insurance deductible and moving expenses may contribute at www.gofundme.com/d659u2b4.
WHAT IS IT?
"CLOVES syndrome is a very rare disorder characterized by tissue overgrowth and complex vascular anomalies.
CLOVES stands for Congenital (present at birth) Lipomatous (fatty) Overgrowth, Vascular malformations, Epidermal nevi (skin lesions) and Scoliosis/skeletal/spinal anomalies.
Those diagnosed can have a variety of signs and symptoms not covered in the CLOVES acronym.
Some examples include: overgrowth of extremities such as arms and legs; large, wide hands or feet; large fingers or toes; and wide space between the toes."
Source: Dr. Mervin Manuel, MD, North Okaloosa Physician Group
This article originally appeared on Crestview News Bulletin: Crestview family seeks help for daughter's rare medical condition
