CHARLOTTE, NC (WBTV) - 8-year-old Andrew Higgins is a Cub Scout. Pack 241 in Hudson. In many ways he’s a typical kid... he’s on a soccer team at the Hudson Recreation Center, likes video games, writing stories, comics and is a big Harry Potter fan.
This 3rd grader also lives with Ehlers-Danlos Syndrome.
“It’s a life-long, degenerative tissue disorder,” said his mom Susan Dula. “It creates significant musculoskeletal complications, including the POTS syndrome. It’s usually very painful for those who live with it and currently has no cure or treatments.”
Those are big words, but please don’t stop reading. Some of our other #MollysKids (Hey Allie! Hey Hannah! Hey Zach! Hey Haley!) have Ehlers-Danlos or POTS. They all say it’s life-changing. One major side complication is chronic fatigue. Kids who live with it tire easily. In Andrew’s soccer games, for example, he can go in and give it his all… for 2-3 minutes. Then he has to signal to his coach that he has to come out to rest.
If Andrew goes to places like Walt Disney World or Carowinds or even a local festival, he has to use a mobility scooter. Too much walking is exhausting.
Fainting, nausea and throwing up have become more of an issue lately for Andrew. His EDS is also creating issues with his colon. He has to have a daily feeding-tube-type flush. As Andrew started a new elementary school this year, he actually fainted on his first day.
“We are so thankful he has a wonderful caring staff at Hudson Elementary School-The HIVE," said his mom Susan. “He hasn’t made a full week without missing at least one day due to sickness. His teacher Katie Causby and Principal Adam Windmiller have been kind and understanding as we learn how to move forward. We’re making every effort to keep him active.”
Sounds like Andrew has a great attitude, as well. He likes to show off his hyper-mobility tricks, like touching his thumb to his arm to bend it back.
EDS is a genetic disorder.
In Andrew’s case, they know where he got it from: his mom.
“I also live with Ehlers-Danlos,” Susan said. “I wasn’t diagnosed until age 43 when symptoms hit me hard. I had to take early retirement from teaching, just to have quality of life. The doctor at the Mayo Clinic explained EDS as ‘not a death sentence, but life without parole.’ Soon after I understood exactly what he meant as my symptoms progressed and my diagnosis came in. Then after that, Andrew was diagnosed with the same thing.”
As some of the other families of #MollysKids have told me, there’s an Ehlers-Danlos Society with headquarters in Maryland and a few blogs and chat groups for people who live with EDS. But, it’s still relatively unknown. Sometimes Susan says she has gone to the ER and the medical staff will Google “Ehlers-Danlos” when she’s told them what she has.
“Hopefully with some more research, scientists can find some answers,” Susan said. “In the meantime would you [mind] writing about my son and why he’s awesome, to help spread a little more awareness again?”
Done. Welcome to #MollysKids, Andrew.
**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.**