The Chronicle - Little Hearts

Jeffrey Cameron was only 10 days old when he was diagnosed with Hypoplastic Left Heart Syndrome (“HLHS”), a type of congenital heart defect (“CHD”). Their doctor gave the Cameron family three options - a heart transplant, a series of open-heart surgeries or what is known as “comfort care.” For Jeffrey’s mother, Lenore, this last option was essentially “do nothing and let your child die.” Based on the doctor’s discouraging prognosis for their son, the Camerons brought their son home from the hospital for comfort care. “We were under the impression after hearing from the doctors that even if we gave him a chance with the staged surgery, his chances of surviving all of them weren't good and if he did, he wouldn't have a quality of life.” Lenore explained, “We were given little to no hope of him making it.” One out of every 100 children is born with a congenital heart defect, making this condition the number one birth defect in the country. Despite the apparent regularity of this condition, Lenore was largely unsuccessful in her attempts to find local support groups for herself and others with CHD children. So Lenore decided to organize an outing at a Chuck E. Cheese restaurant in Massachusetts with other families she had found. “It met my needs,” Lenore said, “and afterwards I thought, we need something. There isn’t anything else out there. So Little Hearts was born in January 1998.” Little Hearts, Inc. was a way for Lenore to offer support and hope to other parents in her situation. Founded in Cromwell, the organization currently has over 1,200 members across the country and the world. Families across the globe are able to connect and find support for their CHD children through their web site, www.littlehearts.org. The site offers both services and resources for these parents. “We do have a lot of information on our web site.” Lenore said. “What’s on there is really just to share the hope with others. We have families in other countries today that have members; we have an email support group. We have a mom from Kuwait. We have a mom from Ireland. Recently, we just got a mom from India. And so they can subscribe to our email support group. If they have a question about their kid, they can just post it. It’s not like going to a meeting. You can just go on the computer and it’s just so much easier.” In addition to the email group, Little Hearts offers a variety of support services and special events to educate others and raise awareness about CHDs. “Parent matching” allows mothers and fathers to connect with a network of other parents whose child has the same or a similar heart defect. Conversely, the “Parents Helping Parents” program allows an “experienced” parent to offer support to others whose child is currently undergoing surgery or treatment. “What works for some parents,” Lenore related, “is that we get membership forms from parents’ older children who don’t need the support but they’re sending in a membership form because they want to help another member. So all they do is check off on the membership form ‘Give out my name for a match’ and maybe that’s all that they want. And so it’s really helpful.” Little Hearts also holds an annual picnic the first Sunday of June, where the kids and their families can enjoy kayaking, moonwalks, or face-painting and balloon-making clowns. The 2005 picnic was held at Winding Trails in Farmington. “Last year there were something like 120 families and that’s about 300 or 400 people.” Lenore stated, “We do piñatas, the kids just love that. The kids just get so excited. They can’t wait to get some of the candy. We have this one little boy, who I think said it best. He comes from New York and he said to his parents, ‘Mom, I’m so glad I was born with a heart defect because if I wasn’t I couldn’t have come to this picnic.’ And this kid went through a lot. He almost didn’t make it. ” Another annual tradition is a writing campaign to the governor to request that February 14 be declared Congenital Heart Defect Awareness Day. “Parents, when they go through this,” Lenore explained, “they want to do something to help and this is one way of just sending in a letter. They get a proclamation [from the governor]. I just had one mom from Maine who wants to get the proclamation. She works at a hospital and she wants to set up a display of CHD day. She can display the proclamation and just bring awareness to congenital heart defects because a lot of people aren’t aware of it. You don’t become aware of these things until it happens to you.” Most kinds of CHDs can be detected in a pre-natal exam through an echocardiogram (a type of ultrasound that takes pictures of the heart using sound waves). A specialist, rather than the obstetrician, typically performs this procedure. Although the defects can be detected prior to birth, the causes of the condition are widely unknown. Certain types of medication including isotretinoin and lithium, as well the obvious alcohol and drug abuse, can possibly increase the chances of a CHD. However, a woman diagnosed with a viral infection such as rubella also has an augmented risk for her unborn child. Scientists have isolated several gene mutations that may also be responsible for CHDs. There are over 35 kinds of CHD, most of which can now be treated or cured by surgery or medical devices such as pacemakers. The medical technology of the last 25 years has allowed a half a million children diagnosed with CHD in this country to live into their adult years. Lenore’s son Jeffrey is now a happy and healthy 9 year-old boy. The Camerons, after trying comfort care for 6 days, ultimately decided to get a second opinion. They were told that the three-stage heart surgery had a 75% chance of being successful. “He’s had all three surgeries.” Lenore stated. “In third grade, they start the one mile run and he actually looks forward to it. He did the one mile run in 4th grade and came in 36th out of 47 kids.” While her son may not be actively involved in sports, that’s okay with both Lenore and Jeffrey. “His brother does football, soccer, and every time he signs up, I ask Jeff if he wants to and he says no. But he eventually went and told me, ‘I don’t think I can.’ So that was a heartbreak. But it doesn’t bother him and he has other interests. Life isn’t about sports.” Although many CHD kids can still experience weakened stamina and may become winded more so than others without their condition, the future seems bright for kids born with these heart defects. Of course, there are still instances where the CHD cannot be treated. “It’s a heartbreak when we lose kids. There’s a little boy in that poster up there,” Lenore related, pointing at a poster on the wall of her new Cromwell office, “and it’s just like, how did that happen? Fortunately, it’s not common. They usually do well, if they went through all three surgeries. They usually do well for HLHS. Where we lose the kids is usually following the 1st surgery. But they’re getting better at what they do out there, that’s the thing. For example, the oldest [person] that has what Jeffrey has is only probably 22, so we don’t know what their adult life will be like. So it’s a wait and see. You just see how the others do. But we also don’t know what the future brings for our heart-healthy kids, so that’s the way I look at it. You have to otherwise you go crazy.” Donations to Little Hearts can be mailed to Little Hearts, Inc., P.O. Box 171, Cromwell, CT 06416 or made on their web site http://www.littlehearts.org.

The Chronicle - MARC Auction

MARC Community Resources, Ltd. held its First Annual Gala Auction on November 19 at the Wadsworth Mansion in Middletown. The auction was hosted by local TV news anchor Joanne Nesti and Arlene Mazzotta of A.R. Mazzotta Employment Agency, with Auctioneer Bill Barrows and Emcee Don DeCesare of WMRD. The items offered ranged from exotic African safaris, Puerto Rican vacation resorts and guided newsroom tours (courtesy of Nesti) to the more typical paintings and handcrafts. “We have some wonderful gift baskets, jewelry, children’s things,” MARC’s Jane Carroll described. “It’s just a huge assortment, almost anything you can think of is there.” Aetna foundation, Wal-Mart, KGS Insurance Services, Middlesex Youth ARC and CL&P sponsored the auction to raise money for MARC’s new location in Cromwell.

“It’s our very first [auction] and we’re really excited about it.” said Carroll. “We’re having wonderful response from our staff and from the community. We’re going to use the money to defray the cost of renovating the building because we needed to make it handicapped accessible.” The building, located at 421 Main Street, will house Vocational and Leisure Services for the organization, which provides special assistance to children and adults with cognitive disabilities in towns throughout Connecticut. The building also hosts the agency’s latest program, Saturday for Kids.

In addition to the purchase of the Cromwell property, MARC reached another landmark this year as it celebrates its 50^th anniversary. An advertisement placed in the local newspaper by Renee Bolt was the starting point of the MARC organization. Bolt was searching for families that wanted to give their mentally retarded children more opportunities in life. Seven other families responded and together they successfully appealed to the Middletown Board of Education to allow their children to attend classes in the public schools. Inspired by this victory, the group became incorporated in 1956 as the Middletown Association of Parents and Friends of Retarded Children.

In the following decade, the organization continued to work towards improving the lives of the mentally handicapped. They began holding religious classes for children and opened preschool and day care programs. In 1971, they undertook a new endeavor, the volunteer group MYARC (Middlesex Youth Association for Retarded Citizens), under the supervision of Brother J. Robert Houlihan at Mercy and Xavier High Schools. The program, still active today, offers its adult participants two sessions each week. The dance therapy portion is held every Tuesday and allows the participants and volunteers (who are students from Mercy and Xavier) a fun way to interact while doing the Electric Slide or the Chicken Dance. A ceramics class is offered on Thursdays. The MYARC program endeavors to create a sense of accomplishment for both its participants and volunteers.

Following the success of MYARC, MARC launched a host of new programs throughout the eighties and nineties from new and ever-changing locations. In 1981, MARC’s building on 12 Fairview Street in Portland opened, and they kicked off a fund-raising campaign to “Put MARC on Wheels” for the purchase of a bus. The "Room to Grow" program was introduced in 1982 as a job assistance program for recent high school graduates. The Supported Employment Program followed in 1987, which matched MARC participants with area employers. They also opened group homes (including MARC II for women and MARC III) and an Opportunities for Older Adults Program for senior citizens with mental retardation. Programs for Home Ownership, Family Intervention, “Caring Families” (designed to increase donations for low-income households) were implemented in the nineties.

Today, the MARC group continues to work towards its original goal of providing empowerment and

choice to the hundreds of individuals with disabilities. Its Self-Advocacy and Individual Options programs are designed to foster a sense of independence among its participants, who, as a result of their particular disabilities, must constantly rely on others to help them through each day. The newest program, Saturday for Kids, focuses more on ensuring that participants fully enjoy their lives by providing social interaction and fun activities. MARC’s purpose is perhaps stated best in the words of its CEO, Elizabeth Werner. “We all need brick and mortar, a place to gather, a place to meet, a place to live—what we really need is a place, a place in the world where we are empowered to be all that we can be. That is our mission.”

Easily Amused - Fun with Politics

For every truly useful and informative web site, there must be an equally trivial and frivolous one. This is the yin and yang of the internet universe. But just because a web site is devoted to bubble wrap doesn’t mean it is any less important than a page dedicated to ending world hunger, does it? Well, alright, it probably does. But it is this heterogeneity that gives the internet a vitality and uniqueness that is unparalleled in any other media. This column is dedicated to these mindlessly fun, sometimes intriguing web sites.

This Week’s Theme - Political Fun

Dancing Bush - http://www.dancingbush.com/

Bush or Chimp? - http://www.bushorchimp.com/

John Kerry is a Douchebag but I’m Voting for Him Anyway -

http://www.johnkerryisadouchebagbutimvotingforhimanyway.com/

Kerry Sloganator - http://kerrysloganator.com/

This Land is Your Land Parody - http://www.jibjab.com

Easily Amused - Get Animated

For every truly useful and informative web site, there must be an equally trivial and frivolous one. This is the yin and yang of the internet universe. But just because a web site is devoted to bubble wrap doesn’t mean it is any less important than a page dedicated to ending world hunger, does it? Well, alright, it probably does. But it is this heterogeneity that gives the internet a vitality and uniqueness that is unparalleled in any other media. This column is dedicated to these mindlessly fun, sometimes intriguing web sites.

This Week’s Theme - Get Animated

Badger Badger Badger - http://www.badgerbadgerbadger.com/

It’s just a bunch of dancing badgers in a field with a mushroom and an evil snake, yet it is oddly hypnotic. Check out their Lord of the Rings Special Edition for more badger fun.

The Hampster Dance - http://www.hampsterdance.com/

These cute little hampsters have been dancing the night away since 1997.

Rather Good - http://www.rathergood.com/

This site boasts a whole slew of odd yet quite entertaining musical animations. Don’t miss “We Like The Moon” (http://www.rathergood.com/moon_song/) or Pavarotti’s ode to elephants (http://www.rathergood.com/elephants/).

Mr. Peg - http://www.mrandmrswheatley.co.uk/mrpeg.html

Sing with me now: “The original man, made out of pegs, pegs for arms, pegs for legs, fancy that! A peg for a hat...”

Ding Fries Are Done - http://www.americanangst.com/dingfries.html

It's everyone’s favorite politically-incorrect Christmas song!

Easily Amused - Random Generation

For every truly useful and informative web site, there must be an equally trivial and frivolous one. This is the yin and yang of the internet universe. But just because a web site is devoted to bubble wrap doesn’t mean it is any less important than a page dedicated to ending world hunger, does it? Well, alright, it probably does. But it is this heterogeneity that gives the internet a vitality and uniqueness that is unparalleled in any other media. This column is dedicated to these mindlessly fun, sometimes intriguing web sites.

This Week’s Theme - The Random Generation

The dissTron - http://www.disstron.com/

Includes such snappy comebacks as “My friend told me you do the chili dog with Phil Donahue!”

Jimmyco Random Fortune Cookie Generator - http://www.jimmyco.net/cookie.html

Includes such optimistic fortunes as “You will drown in a canal.”

The Death Clock - http://www.deathclock.com/

Just in case the dying-in-a-canal fortune wasn’t depressing enough, the Death Clock will pinpoint the exact date of that fatal occurrence (as a friendly reminder that time is running out).

The Louis Farrakhan African Name Generator - http://www.fadetoblack.com/namegenerator/?

I have thrown away the white man’s name of Christina Brzustoski and will be known from this day forth as Zuwadza!

The Surrealist Compliment Generator - http://www.madsci.org/cgi-bin/cgiwrap/~lynn/jardin/SCG/

When you just can’t think of what to say to compliment your mate, you could always try one from this site, such as “You mutter such objects of equine delight, while in a basket of hounds and toes, that the mind's ability to sew together slices of mordant ivory becomes tamed with visions of Tamils in Constantinople.”

Easily Amused - Disgruntled Workers of the World Unite

For every truly useful and informative web site, there must be an equally trivial and frivolous one. This is the yin and yang of the internet universe. But just because a web site is devoted to bubble wrap doesn’t mean it is any less important than a page dedicated to ending world hunger, does it? Well, alright, it probably does. But it is this heterogeneity that gives the internet a vitality and uniqueness that is unparalleled in any other media. This column is dedicated to these mindlessly fun, sometimes intriguing web sites.

This week's theme: Disgruntled Workers of the World Unite!

Customers Suck! The Customer is Never Right - http://customerssuck.com/

A great venting site for any worker who has ever had contact with the general public, Customers Suck has lists of customers’ stupidest questions (“Do you take cash?”) and 67 pages of reasons why they actually suck.

Internet Squeegee Guy - http://www.website1.com/squeegee/

It’s a guy with a squeegee on the Information Superhighway - do you let him clean your monitor or tell him to get lost? A question that has plagued netizens since 1995...

Bitterwaitress - http://www.bitterwaitress.com/

The highlight of Bitterwaitress is its STD, i.e., shitty tippers database. Don’t worry if your name and embarrassingly small tip shows up on their list, there’s a special “submit an apology” feature as well.

Demotivators from Despair.com - http://www.demotivators.com/

For those who are eternally irritated by sappy and trite motivational posters, Depair.com offers the more realistic Demotivator. Example - a pretty picture of french fries reminds us that “Not everyone gets to be an astronaut when they grow up.”

Easily Amused - Lost in Translation

For every truly useful and informative web site, there must be an equally trivial and frivolous one. This is the yin and yang of the internet universe. But just because a web site is devoted to bubble wrap doesn’t mean it is any less important than a page dedicated to ending world hunger, does it? Well, alright, it probably does. But it is this heterogeneity that gives the internet a vitality and uniqueness that is unparalleled in any other media. This column is dedicated to these mindlessly fun, sometimes intriguing web sites.

This Week’s Theme - Lost in Translation

The Bible in Pig Latin - http://www.museumofconceptualart.com/ible-bay.html

You can hear the collective cheer of Pig Latin speakers across the globe now that the Holy Book is available in this elegant tongue.

Kiss This Guy: The Archive of Misheard Lyrics - http://www.kissthisguy.com/

Taken from the famous Jimi Hendrix mondegreen “‘Scuse me while I kiss this guy,” this site is a funny compendium of similarly misunderstood song lyrics.

Engrish - http://www.engrish.com

A hilarious and often surreal look at Japan’s misuse of the English language, from “No Smorking” signs to “Miss Urine Tester USA” t-shirts.

The Dialectizer - http://rinkworks.com/dialect/

Just type in a phrase and watch “Hello, how are you” dialectize into Swedish Chef as “Hellu, hoo ere-a yuoo.” Other dialects include Jive, Redneck and Elmer Fudd.