Parish, community make house wheelchair accessible for boy with degenerative disorder
KANSAS CITY, Mo. (The Catholic Key) - Sixteen-year-old Austin Dearth was scheduled to undergo a lengthy spinal fusion operation in Dec. 2007. The O’Hara High School freshman, one of the three 2007 F.I.R.E. graduates, was born with Lowe Syndrome, a rare progressively degenerative disorder that affects only boys. During discussions with his doctors last spring, his mother Patti Dearth recalled, the family realized that a wheelchair was a part of Austin’s future.
ALL SMILES - Austin, at home on an “I don’t want to get out of bed yet” Saturday. He holds the cross made by Justin Stanley out of old floorboards ripped out of the bathroom. (Marty Denzer/Key)
Patti and three friends, Amy Taylor, Maura Nulton and Mary Ann Hammond, got together to talk about the situation.
“Amy asked, ‘Why don’t we do it ourselves?’ Maura and Mary Ann started throwing out all sorts of plans and suggestions. They are hard to say ‘No’ to individually, but collectively it’s impossible,” Patti Dearth said with a smile.
All hands on deck
It started shortly before Thanksgiving with a notice in the St. Peter Parish bulletin. Fellow parishioners and friends Justin Stanley and Pat Muller were the first to sign on to help. Tom Taylor joined Justin and Pat in coordinating the project, and the men became known as the Three Wise Men.
Tom’s wife, Amy Taylor, wrote a blog describing Austin, his parents and siblings, and incorporated a plea for donations of time, talent and treasure. The blog, along with photos of the ongoing work, was posted on the St. Peter Parish Web site and updated regularly. Bob Dearth later said it was the most beautiful use of the Internet he had ever seen.
Amy wrote that after persuading Bob and Patti Dearth to agree to the project, a handful of volunteers spread the word through grade and high school newsletters and parish bulletins. With the help of St. Peter parishioner Mark Fitzpatrick a fund was established at the Heartland Bank and the first donations started coming in within two days. The original goal, Amy wrote, was to raise $5,000 and enough volunteers for sweat equity to remodel the first floor bath to make it wheelchair accessible. More donations would enable the group, which by this time Patti was calling “Austin’s Army,” to consider further renovations, including a bedroom for Austin and an open kitchen area he could easily access.
Austin’s Army sprang into action. Patti laughed with tears in her eyes as she recounted the team work as volunteers, often more than 20 at a time, drew and studied floor plans, yanked up old floor boards, nailed, mudded and sanded Sheetrock panels, and worked sometimes into the night on electrical and plumbing systems. Austin himself pried off molding and cheered the workers on. In the end, more than 100 volunteers worked on the house.
Generosity beyond goal
By early December, the fund had outstripped the original goal of $5,000 to reach more than $20,000. School children at St. Peter had held a bake sale and raised $950 for the fund.
Austin’s new bedroom was nearly complete, the bathroom was well on its way, and plans had been made to open up the kitchen. Flooring, appliances and installation were donated. His surgery was scheduled for Dec. 14.
The St. Peter’s parish community, the Knights of Columbus, and students from Archbishop O’Hara, St. Teresa’s Academy, Rockhurst and Bishop Miege high schools also pitched in to help.
“People would come to me,” Patti said, “and say, ‘I can’t mud or sand, but I can cook.’ Food started coming to the house, feasts really, in early January and we have enough to last us until March 20.” Austin’s older brother Sam, a senior at Rockhurst, brought in many of his mates on the football team. The young men lifted a 600 lb. beam into place while other workers secured it.
A prayer vigil was set up for Austin, with people signing up online to pray for 15 minutes to an hour that the surgery was successful.
Then a week before the operation, Austin broke his heel. It was a clean break, and would heal well, but the surgery was postponed because complications could arise, especially potential blood clots, from the break.
The Dearths were very disappointed. It had been an emotional roller coaster ride to get to the point where they were comfortable with the approaching operation. Austin himself was prepared to undergo the long, complicated surgery and weather the lengthy recovery period. The family was also concerned that the workers, prayer groups and volunteer cooks were inconvenienced. Only after Maura Nulton assured them that the prayers would continue, the extra time would allow more work to be completed on the house and the meals would be rescheduled did they relax a bit.
The surgery was rescheduled and took place Jan. 18. Justin Stanley had fashioned a cross out of floor boards he pulled from the old bathroom and gave it to the teenager so he could take “a piece of home” to the hospital.
The cross stayed on Austin’s pillow, near his head during the nine-hour operation.
He came home Feb. 11. Austin must wear a brace whenever he is out of bed, and at first had to be tube fed. There are many follow up doctor’s visits, and he has in home nursing care. Patti was able to return to teaching 6th grade at St. Peter School recently, knowing that Austin is in good hands.
A job nearly done
The remodeling is almost complete. “It’s like a patchwork quilt,” Patti said, “an amazing quilt of memories of every spirit who helped. This house is now full of stories; each room will always remind me of the people, the talent and the love. This house speaks of everybody’s kindness.”
A framed blessing by Bishop Robert Finn and the wooden cross hang near the front door as a daily reminder of the caring of the community.
Bob Dearth said that although Archbishop O’Hara High School doesn’t have paraprofessionals to work with Austin and the two other F.I.R.E. special needs students, Nick Constanzo and Parker Levi, a core group of 12 juniors and seniors have volunteered to serve as mentors to the three boys, foregoing free periods to go to classes with them. Another 15 students make sure the boys are comfortable and surrounded by friends at social evens at the high school.
For her senior project, an O’Hara student made a DVD of Austin’s buddies saying “Hi” and sending him messages of encouragement and promises of fast food from McDonald’s and Winstead’s.
“It is so neat to see,” Bob said, “because it comes from their hearts.”
This story was made available to Catholic Online by permission of The Catholic Key(www.catholickey.org), official newspaper of the Diocese of Kansas City-St. Joseph, Mo.
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