Family tries to create 'normal life' for Holbrook blood disorder tot

On a Make-A-Wish trip to Disney World, 3-year-old Katie Patton grabbed her mother’s hand and, just before taking the plunge on Splash Mountain, raised her arms high.

“She’s a daredevil. She has no fear,” said her mom, Lori Patton, 32, of Holbrook. “She went on every ride there and met all her favorite Disney princesses.”

The six-day trip to the Florida amusement park in October was meant to give the family, especially Katie, a breather from years of frequent hospital visits and blood transfusions.

Katie has been hospitalized three times in the past year for complications associated with Diamond Blackfan anemia, a rare life-threatening blood disorder she was diagnosed with only months after she was born in 2009.

Before Katie's birth, doctors at Good Samaritan Hospital in West Islip saw fluid around her heart and abdomen, so they performed a C-section eight weeks before Patton was due, causing her to be born with the severe anemia.

“At this point, Katie has had 70 blood transfusions and goes in every three weeks,” Lori Patton said. “She’s outgoing, our fiery little redhead. We try to give her a normal life.”

To help accomplish that goal, Katie is scheduled to receive a bone-marrow transplant at Cohen Children’s Hospital in New Hyde Park in July. The doctors wouldn’t consider the transplant without a related sibling donor, so her mother is using umbilical cord blood from the birth of her 9-month-old son Brady.

Katie’s specialist, Dr. Adrianna Vlachos, head of the Bone Marrow Failure Program at Cohen Children’s Hospital, said she can live a full life receiving blood transfusions, but the extra iron accrued over time will be detrimental to her body.

“Aside from the transfusions, she will need Iron Chelation Therapy to remove iron from her body,” Vlachos said. “With the transplant, she won’t have to go through all that.”

Her father Ryan, 32, said it won’t be easy. After his daughter receives the transplant she will be hospitalize for eight weeks and quarantined at home for 12 months.

“It hasn’t been easy on us, but I’m looking forward to the transplant phase,” Ryan said. “It’s going to take a physical and emotional toll on her.”

To deal with the transplant’s high cost, the family turned to the Children’s Organ Transplant Association, a national charity based in Bloomington, Ind., to help their family organize community efforts to raise the funds.

Jim Inman Jr., director of marketing at COTA, said the family reached out to the nonprofit in December. COTA reimburses families for medical expenses while they work toward their fundraising goals.

“The ultimate goal is to make sure no child or young adult is denied a life-saving transplant or excluded from a transplant waiting list due to a lack of funds,” he said. “For this family, our goal is help raise $60,000 to cover the costs associated with the transplant.”

So far, the family has raised $8,000 since December.

The family’s upcoming fundraisers include a bar night with buffet and drinks on April 18 at Public House 49 in Patchogue from 7-11 p.m. and “Tee off for Katie” on June 3 at Willow Creek Golf and Country Club in Mount Sinai at 11:30 a.m.

Donations can be mailed to the Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks should be made out to COTA, with “In Honor of Katie P” on the memo line. Visit COTAforKatieP.com to make a donation.