Middle schooler battles rare disease

Published 7:19 am Friday, February 26, 2010

“What’s the antonym of retroactive,” seventh-grader Walker Morgan asked his mother Wednesday, with his head buried in a book.

Morgan, 12, just couldn’t tear himself away from studying that afternoon. The Ellis Middle School honors student has about three months of work to catch up on, and he is determined to do so as soon as possible.

Morgan was diagnosed with Aplastic Anemia, a rare disease of the bone marrow, on Christmas Eve. He has not been able to attend school since early December, spending all of January hospitalized and undergoing three surgeries since his diagnosis.

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While Morgan is faring a bit better now, and even headed back to trumpet practice this week, the medical demands have forced his mother Suzie Miller to take more than two months off without pay.

The Austin Public Schools paraprofessional has health problems herself. Miller was diagnosed at the age of 17 with Multiple Sclerosis, a chronic disease that, among other things, meant she had no sick leave left when her son became ill.

Miller’s colleague, Erin Schoen, and cousin, Amanda Nelson, have planned a benefit to help with Morgan’s ongoing medical expenses. Sponsored by more than 50 local businesses, a chili supper and silent auction will be held at the Moose Lodge, 208 S. Main St., from 4 to 8 p.m. Saturday. The dinner, complete with chili and cornbread courtesy of Hy-Vee and Piggy Blues, is $5. Desserts, homemade by Southgate Elementary staff and family members, are also on the menu.

Up for auction will be apparel and archery gear by Mathews, quilts and blankets, hand-crafted wood items, artwork, hotel rooms, jewelry, sunglasses, music and gift certificates for bowling, movies, massages, gym memberships, car washes and oil changes among other items.

An after-benefit concert will follow at the Hiawatha Bar, 433 10th St. NE, with bands Blue Denim and The Cully Drew Band. Proceeds of the concert also benefit Miller and Morgan.

In addition to planning the benefit, Miller said her family and friends have helped out in many ways since her son was diagnosed.

Jayme Lamers, a co-worker of Miller’s and the former second and third grade teacher of Morgan, even gifted the family a car.

“Ours was on its last leg, and we go to and from Rochester, Mayo, all the time. We go weekly right now,” Miller said.

Morgan is among the three out of every one million people diagnosed with Aplastic Anemia in the United States each year.

The disease causes the bone marrow to stop making enough red blood cells, white blood cells and platelets for the body. For Morgan, this means he spent months with headaches, feeling fatigued and weak, and now he has blood transfusions every few days and blood draws weekly. He also undergoes daily care that includes medications and giving himself shots.

His treatment has been especially complicated as he has developed antibodies to nearly all platelets, Miller said.

Morgan’s physicians hope he shows a good response to his treatment by June or July, his mother said, so that he will not need a bone marrow transplant.

“Right now, knock on wood, he’s looking good,” Miller said. “He is almost back to normal. He’s happy, smart, having fun and able to hang out with his friends a bit again.”

While his doctors work on getting his blood counts up, Morgan is happy to work on getting his schoolwork done. If he catches up by the end of summer, he will be able to remain in honors classes next year.

“A couple of weeks ago, I couldn’t get him out of bed — he was so weak… Now he’s so happy to be busy and I’m happy to go back to work,” Miller said.

“It’s been such a comfort through all of this that our family and friends are really reaching out to us,” she continued. “We appreciate it more than words can say… Anything that people can do to help us get by and help Walker get better.”

“It’s proactive, Mom,” Walker said, pealing himself away from the computer for a second. “The antonym of retroactive is proactive.”

Donations may also be sent to Sterling State Bank, 1419 First Ave. SW, to the benefit fund of Suzie Miller and Walker Morgan. Thrivent Financial Chapter 31180 is providing supplemental funds for the benefit.

Benefit for Walker Morgan

Chili Supper and Silent Auction

Where: Moose Lodge, 208 S. Main St.

When: Saturday, Feb. 27 from 4 to 8 p.m.

Cost: $5