Special day for a special girl

By Donna Lenz Wright/The Week

(Published Nov. 9, 2006, 8:38 a.m.)

Like all 7-year-olds, Maggie Barton, of Delavan Township, is rapidly outgrowing her clothes, toys and preferences. Unlike most 7-year-olds, Maggie is also rapidly outgrowing her home.

"Maggie is such a happy-go-lucky kid who couldn't love being around people more and totally worships her brother (Jack, 5)," said her mom, Beth Barton.

Maggie is a very special little girl. For reasons nobody will ever know, she was born seven weeks premature with cerebral palsy, microcephaly, seizures and cortical vision impairment.

"This was not what we expected," Beth said. "We'll never really know if it happened in-utero or during birth, but it really doesn't matter. We've ruled out any kind of genetic reasons.

But Jim and Beth Burton haven't wasted time asking, "Why us?" or pointing the finger of blame.

"Maggie was supposed to come into our lives for a reason," she continued. "So why place blame? This was how our family was supposed to be."

Up until now it hasn't been a problem to carry Maggie from place to place, including up the stairs of her home to her bedroom and the home's only bathroom. But the time has come when this isn't possible for some of her caregivers, and won't be for her parents very soon.

So friends and family have organized a benefit to raise funds for the costs of making Maggie's home truly a home for her.

A room downstairs can be made into her bedroom, but a bathroom needs to be added, as well as ramps up to the outside doors.

"We're trying to plan not for when she's 40 pounds, but for when she's 100 pounds," Beth said. "We're really lucky that our home has pretty decent-sized doorways. It won't fit a motorized (wheel)chair-if she ever gets one-but we'll cross that bridge as it comes."

While there are government agencies that assist families with needs like the Barton's, the time waiting to make it to the top of the waiting lists has run out.

"We've talked to councils, representatives and legislators and they're very sympathetic; there just aren't any funds there," she said. "We're learning that kids don't make it to the top of those lists until they're 12 or 13, and we just can't wait that long."

Maggie is non-verbal and has cognitive and physical disabilities. She attends the School for the Visually Impaired in Janesville and has many hurdles due to her multiple disabilities.

Cerebral palsy is a particularly difficult condition. One of its most troublesome symptoms is extreme muscle rigidity. Because of this, Maggie's hip was actually pulled from her socket this year, which is being successfully treated with a new form of medication. Her seizures are also being very successfully handled through diet.

Even so, it's been a particularly hard year medically for Maggie. And in years to come, hard spots like this are bound to recur. Leftover funds raised from the benefit will hopefully be able to be saved for probable future medical costs.

"We've been very lucky up until this year with medical interventions," Beth said.

"Maggie, unfortunately, yes, definitely has cognitive and physical delays. But when it comes down to it, she was sent to us to teach us about the power of unconditional love - not just us, but everyone she encounters.

"Once you meet Maggie you never forget her-even those who just hear her story. Everyone says that. She's just a kid in there just like any 7-year-old.

"We want to make the best of her life and take it from there."

The benefit for Maggie is Sunday, Nov. 19, 2-9 p.m. at the Irish American Heritage Center, 4626 N. Knox, Chicago. There will be tons of food, music, a silent auction, cash bar and raffles with prizes of $10,000, $5,000 and $1,000.

The reason for the Chicago location is that it is the organization in which her father, Noel Daly, belongs, and who organized and donated the space for the event.

"I grew up in Des Plaines and moved here about 15 years ago," Beth said. "We're just amazed at the outpouring of support from them. We can't thank them enough."

Locals who can't attend the event can help the family by donating items for the silent auction up until the day of the event, call Beth at 245-1256 or by donating to the Benefit for Maggie Barton at the LaSalle Bank, attention to Stacey LaTona, 4747 W. Peterson Ave., Chicago, IL 60646. For more information, call 245-1256.

For Maggie's whole story, visit www.caringbridge.com, then enter the password: maggiebarton.



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