Little Girl Making Strides in Fight Against Rare Disorder
HOLT, Mo. — A 4-year-old Missouri girl has cleared a big hurdle in her battle to overcome a rare genetic disorder.
FOX 4 News first reported the story of Brooklin Altis back in August. She’s the first known case of a genetic syndrome so rare — doctors in the United States say they’ve never seen it before. Thanks in part to the generosity of FOX 4 viewers, Brooklin is recovering from successful surgery to repair a dislocated hip.
It’s one of many problems the 4-year-old faces as a result of being born without part of a chromosome that doctors say they’ve never seen missing before.
“The first surgery went absolutely amazing,” said Cori Altis, Brooklin’s mother. “Much better than the doctor even expected.”
This is Brooklin’s first week without braces on her legs following surgery to repair her right hip. She’ll have to return to the Children’s Hospital of Philadelphia next month for similar surgery on her left hip. Her mother is overwhelmed by all the support and donations the family has received after FOX 4 reported that Brooklin is missing part of her 9th chromosome.
“We just want to say a big thank you to everyone that has helped,” Cori Altis said. “Every single person that has come out and helped us we want to give a huge thank you. Words cannot express how much it has helped us.”
Brooklin is ready to resume therapy again. She suffers from a host of developmental delays, including a tiny head size for her age. To help her overcome these hurdles, Brooklin has received speech therapy, vision therapy, occupational therapy, aquatic therapy, and physical therapy to regain movement in her legs.
“About Christmastime she should be done, out of her casting, and ready to start walking again, learning how to walk and crawl again,” her mother said. “Around Christmastime or beginning of next year, we will be going to the Cleveland Clinic to find out what type of seizures she’s having.”
Because Brooklin is the only child known to have this genetic problem, the family must travel to Philadelphia to see a doctor who specializes in the 9th chromosome. Health insurance is covering Brooklin’s treatment but the family has relied the support of others to cover travel and lodging expenses.
“We thought we were going to stay at the Ronald McDonald house but they did not have a place for us to stay,” Cori Altis said. “We started checking around to get a hotel, to stay in a hotel. There were 3 conventions going on that week, so there was nowhere to stay.”
The Firehouse Bar and Grill in North Kansas City is hosting a motorcycle ride fundraiser for Brooklin Altis on Saturday. For more more information go to: www.brooklinsride.com or call 816-255-2343. You can also make a donation to “Brooklin’s Fund” at any U.S. Bank branch. Another fundraiser: “Brooklin’s Favorite Recipes” cookbook also is expected to be available by mid-December. To place an order email: email@example.com