Katie Creedon, 5, is helped by her mother, Jessica, left, and ski instructor Heather Stukas at Lost Valley in Auburn on Sunday. Creedon has a rare genetic disorder — CDKL5 deficiency — and doctors told her parents it was unlikely Katie would live to be 5. She turns 6 on Wednesday. (Daryn Slover/Sun Journal)

Katie Creedon’s parents were told by doctors that their daughter would not live to see her fifth birthday.

Katie turns 6 on Wednesday.

“That’s pretty cool,” Jessica Creedon said of her daughter’s upcoming birthday.

Katie Creedon of Buxton was born with a rare genetic disorder known as CDKL5 deficiency.

“It’s so rare that they don’t have a name for it yet,” said Jessica Creedon.

Katie has frequent seizures, cannot speak and her life span will be shortened, according to her mother.

“We were told that Katie would never walk,,” Jessica Creedon said, “but Katie proved her doctor’s wrong and took her first steps at 4 years old.”

Katie can now use sign language to communicate with her doctors, including her telling them that she is now a skier.

Katie, her brothers Max and Carter and her mom and dad were all treated Sunday to a day on skis, including free lessons, balloons, banners and a pizza party at Lost Valley in Auburn.

“Lost Valley really made it come true,” Jessica Creedon said of her three children’s first experience on the slopes.

Creedon said the staff at Lost Valley was a bit nervous about whether it could meet Katie’s needs when the ski area was first contacted by the Make-A-Wish Foundation.

“But Tad was determined to make it happen,” Creedon said of Tad Bettcher, snow sports director at Lost Valley.

“No, no, we are going to make this work,” Creedon remembers Bettcher saying numerous times.

“Lost Valley took it to a new level,” Creedon said.

Despite her not being able to talk, Katie made many new friends Sunday at Lost Valley. She was quick to give out hugs and birthday bead necklaces to appreciative strangers.  

“She loves people,” Jessica Creedon said. “She loves life more than most people I know.”

She added: “That’s all we want for Katie. We try to make her life as normal as can be. Which can be hard sometimes.” 

Katie Creedon, 5, plays with her brother Max, 11, while getting their rented ski equipment fitted Sunday at Lost Valley in Auburn. “She loves people,” Jessica Creedon said of her daughter. (Daryn Slover/Sun Journal)

“Lost Valley really made it come true,” Jessica Creedon said of Katie’s first time on skis. (Daryn Slover/Sun Journal)

Katie Creedon, 5, cannot speak but does understand what she hears.  (Daryn Slover/Sun Journal)

Katie Creedon, 5, gets ready to ski Sunday with her mother, Jessica, and father, Paul, at Lost Valley in Auburn. (Daryn Slover/Sun Journal)

Ski instructors Heather Stukas, left, and Sarah Gould help Katie Creedon, 5, put on her gloves Sunday at Lost Valley in Auburn.  (Daryn Slover/Sun Journal)

Copy the Story Link