“There is hope if people will begin to awaken that spiritual part of themselves, that heartfelt knowledge that we are caretakers of this planet.” ~ Brooke Medicine Eagle
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Bee Intelligencer Informing the towns of Middlebury, Southbury, Woodbury, Naugatuck, Oxford and Watertown A FREE COMMUNITY NEWSPAPER
Volume IX, No. 16
Raising Rett Syndrome research money By MARJORIE NEEDHAM Middlebury Parks and Recreation Director Betty Proulx has been learning about Rett Syndrome in the year and a half since her granddaughter Kaley, 4, was diagnosed with the disease. “I’m as new to this as anyone else right now,” she said. Proulx knows her granddaughter’s disease is incurable, but she also knows research will find a cure, and it will take money to support that research. That’s why she is spending the month of April, the month in which Kaley was born, asking donors to “plant a flower in our garden of hope.” It’s not an actual garden; it is a garden represented by cards with a flower image. When donors give a dollar to the fundraiser, their names go on the cards, which frame doorways and trail along walls in the Middlebury Parks and Recreation Department office. Proulx posted about the fundraiser on Facebook and said it has proven to be a wonderful way to let people know about the cards. She also tells everyone she runs into about them. “Anybody I see, I ask them if they want to buy a flower,” Proulx said. “I figured if I sold 100 (cards) the first time, I would be happy,” she said. Instead, she sold out of the first 250 cards and has started on the second 250 cards. “I cannot thank everyone who has donated enough. I am overwhelmed,” she said. She said employees of Taft School, where Kaley’s “Poppy” works, and employees at Region 14, where Kaley’s aunt works, have been big supporters of the fundraiser. Cards are on sale in the Middlebury Parks and Recreation office and also at Charlie Fenn’s Haircutters at 485 Main St. in Watertown. The cards are from Girl Power 2 Cure, (www.girlpower2cure.org), a nonprofit started by the mother of a Rett Syndrome child. It is dedicated to making Rett Syndrome the first curable neurological disorder by raising funds for research on the disease. It also supports girls who participate in events that raise awareness and funds for Rett Syndrome research. A flyer from the organization says, “Together girls can move mountains!” The organization says it takes inspiration from the flower, which is “always in bloom with hope and positive energy, ready to grow anywhere there is someone ready to join in our mission.” So what is Rett Syndrome? The Girl Power site and the International Rett Syndrome site (www.rettsyndrome.org) say it is a debilitating neurological/movement disorder that primarily affects females. It is the leading genetic cause of severe impairment in girls. Most who have the disease cannot speak, walk or use their hands. It is as prevalent as amyotrophic lateral sclerosis (ALS), cystic fibrosis and Huntington’s disease. A baby girl with Rett Syndrome is born every 90 minutes. Although the disease is genetic, it is not hereditary; it is caused by a single gene mutation that leads to underproduction of an important brain protein. It therefore is potentially reversible if the brain protein can be restored to a normal level. Girls with Rett Syndrome are normal at birth, but between the ages of one and two they lose their ability
Friday, April 19, 2013
P&Z, WPCA review POCD By TERRENCE S. MCAULIFFE
Middlebury Parks and Recreation Director Betty Proulx holds one of the “flowers” that frame the doorway to her office. She is raising funds for Rett Syndrome research by collecting donations of a dollar for each flower. (Marjorie Needham photo)
Kaley Langzettel, granddaughter of Middlebury Parks and Recreation Director Betty Proulx, has Rett Syndrome, a debilitating neurological/ movement disorder that primarily affects girls. She is doing well in a special program at the Western Pennsylvania School for the Blind. (Submitted photo) to speak, walk, crawl or use their Kaley’s parents are Proulx’s hands. Complications can include daughter Jenn, a 1998 graduate of seizures, sudden death in their sleep Pomperaug High School, and her and scoliosis. As grim as this sounds, husband, Anthony Langzettel. They research has proven the syndrome recently welcome a new addition to is reversible, and research to make the family; daughter Evelyn was born that happen is ongoing. A number March 14. They live in Pennsylvania. of clinical studies are listed on the Proulx said Jenn and Anthony Rett Syndrome website. have done and continue to do all
they can to optimize Kaley’s abilities. Because she has a vision problem, she can attend the Western Pennsylvania School for the Blind. Before Kaley started classes there, therapists came to the house to administer physical therapy, occupational therapy and vision therapy. Proulx said, “Her parents didn’t just sit around and wait to see what would happen.” “The School for the Blind is an amazing place,” Proulx said. Kaley is in a class of six. In addition to physical and occupational therapy, her classes include swimming, music and gym. Although she isn’t expected to be able to stand or walk, her muscle tone has definitely improved as a result of the school’s programs. Kaley doesn’t talk, but Proulx said she smiles whenever she sees her grandparents arrive, and she laughs a lot. “She knows us. I can talk to her, and you can see her responses,” Proulx said. Proulx explained, “Inside they (Rett patients) comprehend. They just can’t express it outwardly.” She said many learn to communicate through computers, and Kaley now has an iPad. Tears welling up in her eyes, Proulx said it’s hard to live so far from her granddaughter knowing how much is involved in her daily care. “I wish I lived closer, so I could do more for them,” she said.
Alphabet soup lovers might enjoy the acronyms associated with the April 16 meeting between the Middlebury Planning and Zoning Commission (P&Z) and the Water Pollution Control Authority (WPCA) to discuss the Plan of Conservation and Development (POCD) and maps from the Council of Governments of the Central Naugatuck Valley (COG). The joint meeting was during a regular WPCA meeting, but it also was legally designated a special P&Z meeting since a quorum of P&Z members were present, and the meeting was not a regularly scheduled P&Z meeting. The purpose of the meeting was to update the 2001 POCD with sewer-capacity information and color-coded maps from the COG. Town Planner Brian Miller told WPCA Chairman Robert Smith sewer capacity and availability was a critical component of the land-use plan. “The WPCA is really kind of a critical gatekeeper on development in the town,” he said. He asked for data on current capacity and whether additional capacity could be acquired from Naugatuck and at what cost. He also asked for a sewer-service map showing current and planned service, including lots in service areas not already connected. Smith said lots intended to be serviced were already subject to a sewer assessment and part of capacity calculations and reminded Miller of the Residential Sewer Avoidance Policy adopted under Department of Environmental Protection recommendations to preserve the limited Middlebury capacity for more desirable commercial development. WPCA employee Kenneth Long said twoyear-old color-coded maps produced by the COG were up to date with the exception of about 10 parcels. Smith said he would refer Miller’s questions to WPCA Consulting Engineer Michael Angier, who was not present at the meeting. State statutes require the POCD be revised every 10 years, and work was begun in January 2011 after selectmen awarded a $66,000 contract to the Turner-Miller Group in December 2010. The goal was to have it finished by year end, but legislation later in 2011 allowed a slip to 2013, and work on the document slowed down. Several workshops and visioning sessions were held, with the emphasis on defining a Middlebury Center Village District. P&Z Chairman Curtis Bosco told the Bee-Intelligencer the POCD would be ready for a public hearing after the WPCA information was received and a few more tweaks made to the Middlebury Center portion of the plan. The next regular P&Z meeting is Thursday, May 2. Additional POCD update meetings have not yet been scheduled.
Absentee ballots available Absentee ballots are available in the Middlebury town clerk’s office for the May 8, 2013, budget referendum. Electors and property owners owning property assessed at $1,000 or more on the last completed grand list are eligible to vote. They also must be a U.S. citizen and at least 18 years old. There are two questions on the ballot: Question 1: “Shall the 2013-2014 proposed Town of Middlebury Municipal Budget in the amount of $10,052,636 be approved?” Yes / No Question 2: “Shall the proposed 2013-2014 Budget of the Pomperaug Regional School District #15 in the amount of $61,952,264 be adopted?” Yes / No An application must be filled out before a ballot can be issued. Ballots will not be mailed. Applications are available at the town clerk’s office at 1212 Whittemore Road or can be downloaded from the Secretary of the State’s website, www.sots.ct.gov, under Elections & Voting. Print the application form for referendum only. The Middlebury town clerk’s office is open from 9 a.m. to 5 p.m. Monday through Friday. Additional information may be obtained by calling the office at 203-758-2557.
Adoptable Pets................ 8 Classifieds....................... 7 Community Calendar....... 2 In Brief............................ 4 It Happened in Middlebury....8 Legal Notices.................. 7
Library Happenings.......... 2 Nuggets for Life.............. 6 Puzzles........................... 7 Region 15 Calendar........ 3 Senior Center News......... 3 Sports Quiz..................... 6
Editorial Office: Email: mbisubmit@gmail.com Phone: 203-577-6800 Mail: P.O. Box 10, Middlebury, CT 06762
Upcoming Events
Inside this Issue
saturday
April 20
SUNday
April 21
North Congregational Church Flea Market & Bake Sale
When: 9 a.m. to 2:30 p.m. What: More than 30 vendors sell goods; bake sale; free admission Where: North Congregational Church at 11 Main St. North in Woodbury
Middlebury Earth Day Greenway & Parks Cleanup
When: 1 p.m. What: Pick up litter along the Greenway and in parks Where: Meet at Meadowview Park to get gloves and garbage bags
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Join Middlebury Earth Day cleanup
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