December 2005

Patrick Leads his Pack in Hope for Arthritis Cure

by Wenda Reed

The Jingle Bell Run to raise money for arthritis research and services is all about hope. But two years ago, when Patrick Lease and his friends and family participated in their first run, hope seemed in short supply.

After three years of high steroid doses to treat Juvenile Rheumatoid Arthritis, the Fort Lewis boy suffered from stunted growth, osteoporosis and cataracts. Twice doctors tried to wean him from the steroids, and both times the arthritis flared back, attacking his organs as well as his joints. If he could not stop the steroids, he could not grow. If he could not grow, doctors said he would soon die, his mother Amy Lease recounts.

Still, she and her husband Scott formed “Patrick’s Pack” and signed up for the walking portion of the Jingle Bell Run. Patrick, then 5, was not allowed to walk or run because his bones were so brittle that his spine was fracturing. He sat scrunched in his stroller, his contracted hands encased in mittens, but he still managed a thumbs-up signal.

Patrick doesn’t talk about it much. “When you have arthritis, it can hurt real bad,” is all he’ll say.

The next year involved “a lot of Enbrel (a drug to block high levels of inflammatory proteins) and a lot of prayer,” his mother summarizes. Last December, Patrick’s Pack, including his sister Maddy and his little brother Mark, were back at the Jingle Bell Run, winning first place in the costume contest. Their theme was “Raising the dough to cook up a cure,” and their costumes were chef aprons and hats. They pushed Patrick, dressed as a gingerbread boy, in a stroller decorated to look like an oven.

This time he didn’t sit still. He popped out of the stroller-oven and shouted, “Catch me if you can,” as he took off running.

This December, the irrepressible 7-year-old begins his eighth month without steroids, the arthritis in remission and his growth beginning to catch up with his 5-year-old sister’s. He runs, he jumps and he rides his bike (needing a larger one this summer, his mother rejoices). He participates in all school activities with his second-grade class at Evergreen Elementary School and has begun playing T-ball and soccer. He loves to play make-believe and to dress up, particularly as the latest super hero or a pirate. Patrick is an honorary member of the Caribbean Pirates of Seattle and a friend of Laffite, the current “Captain Kidd” of the Seafair Pirates.

As the 2005 Jingle Bell Run & Walk Honoree, Patrick plans to run in the Amgen 1K Children’s Run with the Elves and walk with his pack in the Safeco Santa Striders 5K Walk. He bursts with excitement as he describes his costume: He will be the conductor from his favorite book, The Polar Express, and his Pack will re-create the back of the caboose. His mother is choreographing a fast Charleston to go with a song from the movie, “Hot, Hot Chocolate.” She marvels that Patrick wants to finish the dance by sliding in on one knee. His father, newly returned from Iraq, will be able to watch.

The theme of the book is “Believe,” and the theme for Patrick’s Pack no longer seems so far out of reach – “Believe, there is a cure.”

Wenda Reed is editor of Puget Sound Parent and Seattle's Child.

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