Great article in todays New Haven Register on the front page of the Connecticut section!  Be sure to check it out!


Link to full article: http://bit.ly/1eL9EE

Link to pdf version: http://bit.ly/6m0n4T


A family needed a wheelchair-accessible house, a community said no problem

Sunday, October 11, 2009

By Susan Misur, Register Staff

Mary Caruso, left, and her daughters Sam Bode, second from right, and Alexandria Bode, right, listen to architect David Strong of Branford explain the changes to the Bode/Caruso house in North Branford. (Mara Lavitt/Register)


NORTH BRANFORD — Mary Caruso’s daughters, Sam and Alex Bode, sat at their kitchen table Friday afternoon poring over an architect’s drawings of an addition to their home.


Caruso stacked fresh-baked cookies and brownies on a plate and the two family dogs barked for attention, but Sam, 23, and Alex, 19, were engrossed in the building design and measurements — which would seem surprising if the renovation wasn’t about to change their lives.

The sisters must use wheelchairs because of a degenerative neuro-muscular disease called Friedreich’s ataxia. Construction work at their house over the next year will give them a residential elevator, attached garage, exercise room for therapy and more space to use their wheelchairs — all at no cost to the family.

Volunteers are describing the project as North Branford’s version of ABC’s tear-jerking TV show, “Extreme Home Makeover,” with local architects, builders, excavators, volunteers and fund-raisers coming together to renovate Caruso’s house to fit her family’s needs.

In fact, Caruso was a finalist for the show twice, but wasn’t chosen. A little more than a year ago, family friends decided to take matters into their own hands.

“We’re really trying to get this done for the girls, and Mary’s always doing for other people in town, and I think that’s why everybody’s so excited to help her,” said Sue Monaco, who, with friend Laura Whaley, is heading up a new charity called Open Your Heart to raise money for the project.

Sam was diagnosed with the disease when she was 8 after Caruso noticed she was acting clumsily and falling often, despite being a talented athlete who played basketball and soccer and rode horses. Doctors were stumped and took six months to diagnose Sam, who was slowly losing strength in her legs.

“I bought her a yellow walker, and for her birthday in seventh grade I decorated it and brought it to school for her,” Caruso recalled.

“By the end of seventh grade, I began using a wheelchair,” Sam chimed in.

Alex was diagnosed at about 6 years old, Caruso said. She knew what to look for the second time around, and said it’s common for siblings to have the disease because it’s a genetic disorder.

When they moved into the century-old North Branford Store building at North Street and Foxon Road nine years ago, the sisters weren’t using wheelchairs full time yet. Since then, Caruso has upgraded the kitchen and bathroom along with their bedrooms to accommodate their chairs.

“The disease is progressive. It’s never status quo. You get used to life one way and then something happens and you have to adjust,” Caruso said.

But the disease hasn’t stopped the young women: They attend Southern Connecticut State University, and while Sam’s dream is to intern and work at ESPN sports TV network, Alex is interested in social work.

They live in a dormitory at SCSU during the week and come home on weekends.

In Caruso’s house, the kitchen’s island and counters are about 3 feet high, and lifts in the sisters’ rooms that are built into the ceiling and can reach all the way to the floor carry them out of bed and into their wheelchairs in the morning. She purchased the lifts with a grant.

Caruso also added a ramp along the outside of the house to get from the car to the back door, though it hasn’t been wide enough for EMTs to carry and turn a gurney when Alex had to take a trip to the hospital.

In the winter or on rainy days, taking Sam and Alex out can be risky. Their chairs have slipped and rolled away and they’ve fallen into snowbanks when going from the car to the house, Caruso said.

So Monaco and Whaley decided Caruso at least needed a new attached garage with a lift from the garage to the house for the girls’ wheelchairs. The project grew from there, and architect David Strong has designed a new wing of the home with a second-floor gym for the girls’ exercise therapy equipment, an elevator to get to it and a more spacious family room.

Strong, of Branford-based Strong Ideas architectural firm, is also a distant cousin of Caruso’s — they just met about a year ago after Strong saw an e-mail petition to get Caruso’s family on ABC’s show and realized they were related.

For the past six months, he’s been designing the home’s addition with green aspects in mind: The roofs will have plants, wildflowers and grass growing on them, tree stumps cleared from the yard will be used for porch posts, and a possible wind turbine on the roof may generate electricity, he said.

A neighbor has already donated a small plot of land for Caruso to use for the addition, and companies like Maple Wood Construction, Tanner Tree Services, C. Troiano & Sons Excavating, Eric Anderson Surveyers, Tilcon Connecticut, Wettemann Brothers and Barrett Electric are donating their services.

Caruso said she keeps a list of their names and adds to it in chalk on a section of the living room wall covered with black chalkboard paint to remind her of how much the community has reached out.

“It really gives you strength to deal with things on a daily basis. You don’t feel as isolated because people are always helping,” Caruso said. “It’s really overwhelming.”

Tree clearing began Saturday and a fund-raiser tag sale will be held at Caruso’s home at 1 North St. on Oct. 24. Donations for the renovation can be sent to Open Your Heart, P.O. Box 273, Northford 06472. To get involved in fund-raising or the home construction, e-mail openyourheart09@aol.com.

Susan Misur can be reached at smisur@nhregister.com or 789-5742.


URL: http://www.nhregister.com/articles/2009/10/11/news/shoreline/doc4ad1ac722e1e4422275626.prt


© 2010 nhregister.com, a Journal Register Property

A Good Reason to “Open Your Heart”: Laura Whaley Leads Local Effort

By Pam Johnson

Publication: Shore Publishing

Published 11/26/2009 12:00 AM

Updated 11/27/2009 11:30 AM

Photo by Pam Johnson/The Guilford Courier

Displaying a serendipitous sign of support, Laura Whaley holds a heart-shaped stone unearthed at North Branford’s Caruso/Bode project, underway thanks to Open Your Heart, Help the Community, Inc., a non-profit cofounded by Guilford resident Whaley.



Laura Whaley Leads Local Effort

Serendipity seems to grace the relationship of Guilford resident Laura Whaley and her friend Mary Caruso. How else could one explain how Whaley, proprietor of a residential elevator company (with husband, Jack) would so firmly enter the life of Mary and her two beautiful daughters Sam and Alex?


When Laura and Mary met at Mary’s former North Branford children’s store Country Kids 10 years ago, “they both were still walking,” says Laura of Sam and Alex.


The two girls, (Sam’s now 23; Alex, 19), both have Friedreich’s ataxia, a nervous system-damaging genetic disease that has since made wheelchairs a part of their very active lives. On their behalf, Laura has cofounded a non-profit organization, Open Your Heart, Help the Community, Inc., with cofounder Suzy Monaco of Northford.


Since February 2009, Laura has helped Open Your Heart raise funds to bring a garage/living addition to the Caruso/Bode family home in North Branford. Plans donated by architect David Strong call for an attached garage with a second-level physical therapy gym. To reach that second level, the Whaley’s Connecticut Residential Elevators is donating an elevator. The addition will connect to the existing home, where more renovations will assist the girls.


But that’s not the first contribution to this family Laura has been happy to make. For seven years, she’s organized an annual local fundraising event for Friedreich’s ataxia research and awareness on their behalf.


Helping them is “just natural,” says Laura. “When you meet them, you love them. Mary’s always happy and the girls are
always happy. It just touches your heart to know them.”


On a warm day last week, in another bit of serendipity, workers installing the foundation unearthed a heart-shaped stone next to Mary’s circa-1890s home. As it happened, the foundation was being poured that day through the generosity of a company co-owned by Laura’s North Guilford neighbors, brothers Chris and Ed Wetteman. Another neighbor, attorney Paul Farren, is donating legal services to the effort.


Thanks to Wetteman Bros. Concrete, Farren, and heartfelt contributions of goods, services, and money from many other local businesses, professionals, and individuals, this project is sprinting toward its goal, says Laura.


“It’s great, in this economy, that people are helping,” Laura says. “Suzy and I had talked about doing a project like this for Mary and the girls for years. Once we had the land, we knew we could do it.”


Laura was instrumental in securing the land abutting Mary’s home; the land was donated by sisters Helen Redmond and
Patricia Cameron.


“It’s a 20 by 30 piece of land that had their old family house on it. I offered to buy it, but [they] didn’t want to sell it,” says Laura.


Until, that is, Laura was able to have Redmond meet Mary, who served up some of her trademark homemade cookies and an equally bountiful share of her generous, warm spirit. Rather than selling the land, Redmond and her sister promptly donated the parcel.


Laura and Suzy then quickly moved to establish Open Your Heart. Among its first contributions was $10,000 from another North Branford non-profit founded by Suzy (now retired from its board), Kids for Kids, Dancing for Life. Like Open Your Heart, it’s an all-volunteer non-profit through which every dollar raised goes directly to the cause. After the Caruso/Bode project’s complete, Open Your Heart intends to help other local families in need.


Now halfway toward raising the estimated half million dollars (in combined funding, goods, and services) needed for the Caruso/Bode project, Laura’s confident it will be completed ahead of schedule.


She also delights in the knowledge so many have stepped up to help the family she’s come to think of as a part of her own. The two families travel together on vacation and the girls often visit the Whaleys’ home. For years, the Whaleys shared the historic
family farm with Jack’s beloved great-uncle Joe Lynch until he passed away at age 97. The home is fitted with an elevator.


Laura says she’s also grateful every day for having Sam and Alex in the life of her son, Matt, 5.


“Matt’s known them since he was born. He doesn’t see a handicap; he just sees Sam and Alex. He’s going to grow up to be a better person because of them. They couldn’t be better teachers.”


Open Your Heart, Help the Community, Inc., still needs donations of goods (windows and lumber especially) and monetary contributions to complete the Caruso/Bode project. Tax-deductible donations can be sent to: “Open Your Heart, Help the Community,” P.O. Box 273, Northford, CT 06472. To contact the organization, email openyourheart09@aol.com.