Born with Type 1 diabetes, Cheryl was 22 years old when she was diagnosed with diabetic retinopothy, a common diabetic eye disease that is the leading cause of blindness in American adults.

Cheryl’s life changed forever one night in 2001 when she was driving home from her job as an administrative assistant when suddenly, she recalls, her vision became completely blurry. “I had to pull over. I couldn’t see.”

Cheryl’s doctor told her that if her diabetes was affecting her eyes, it would also affect other organs in her body. Subsequently her kidneys began to fail as well. In 2002 she began kidney dialysis treatments three times a week for four hours a day. Her treatments continued for three years until she went through another life-altering experience when her friend Steve Carroll donated his kidney to her.

Once Cheryl recuperated from the organ transplant, she was determined to go back to work. During her dialysis treatments, she lost her sight completely in one eye. She says her remaining sight is “like looking through a telescope hole covered in thick plastic.”

Cheryl enrolled in a training program provided by the New York State Commission for the Blind and Visually Handicapped (CBVH), where she learned new job skills, including how to use computer software for the blind.

After completing the program, Cheryl was ready for the next step in her recovery which was to go back to school. She began taking classes at Branford Hall Career Institute in Bohemia, and became the school’s first blind student to graduate. She found an administrative job in the healthcare field where she worked for two years.

Cheryl felt she missed 10 years of her life being sick and was ready to transition into a new career. She began scouring the internet for new connections.

“I found the National Federation of the Blind (NFB) online and joined the greater Long Island chapter,” she says.

The NFB is the largest non-profit organization in the world for the blind that is operated by the blind. Cheryl now serves as the treasurer of the Long Island chapter, adding that all members and officers must be blind to serve in a board position. “We are advocates for education, employment and accessibility,” Cheryl says proudly. “We lobby ourselves, we don’t hire anyone.”

After searching through the federation’s resources, she decided that becoming a travel agent would be a good career choice. She loved to travel and she could work from home. “I have a background in customer service and sales, and this was a good fit,” she says. After completing her job training online, Cheryl started working through a host travel agency, confident that becoming a travel agent was the right career move.

In 2009 Cheryl and her husband, Nelson, founded Echevarria Travel. Cheryl says Nelson is an integral part of the agency, and is the photographer and videographer for the travel images used on their website. “I’m the only blind travel agent in the tri-state area that I know of,” she says and was recently named president of the NFB’s national travel and tourism division.

Cheryl’s blindness has given her a very clear insight into the planning required to ensure a pleasurable trip for her clients.

Her agency offers services to everyone, but Cheryl’s specialty is the traveler who is blind, on dialysis, in a wheelchair, or has had an organ transplant. As a survivor of all of these illnesses, Cheryl is uniquely qualified to help them plan their trip.

“I know what a person would need and the questions to ask,” she says. “What’s your degree of blindness?  Do you use a cane?”

If travel plans include a cruise, she will want to know if the client can read Braille. “I ask because not everyone does,” she explains. “If they don’t [read Braille], I contact the cruise line and make sure they get a meet-and-greet and tour of the ship so they can familiarize themselves with their surroundings,” she says.

If they plan on traveling with their service animal, Cheryl explains that they will need to go to their vet to get a health certificate and they need to secure a permit to bring the animal into another country.

The cruise industry has taken notice of this newly mobile customer base and are making their vessels more accessible so sight-impaired travelers can acclimate themselves quickly.

Cheryl has been working closely with Norwegian Cruise Lines, and says she helped them implement Braille menus on their ships.

No two visually impaired people have the same level of functional vision so Cheryl helps her clients overcome some of the red tape they might encounter to ensure that they have a good experience. All of this pre-travel preparation includes additional paperwork that Cheryl helps her clients complete as part of her services.

Understanding the requirements and information needed for traveling today is invaluable. As a travel advocate and advisor for the blind, Cheryl has opened up a world of new experiences for these sensory travelers that might have been out of reach before.

For more information, email: reservations@echevarriatravel.com, call Cheryl at 631-456-5394, or toll free at 866-580-5574; or go to: www.echevarriatravel.com. For daily updates read Cheryl’s blog at www.echevarriatravel.wordpress.com

Barbie is back in the news again in a big way. She has people talking in more than 25 languages around the world, and has set the social networking world on fire with the question: “Should there be a Bald Barbie for children with cancer?”

Just to set the record straight, Beautiful & Bald Barbie does exist; in fact, there are two of them, both living with little girls right here on Long Island. How this pair of prototypes came to be made especially for Sadie Freifeld and Genesis Reyes is the result of the efforts of Beth Freifeld of Merrick, Sadie’s mother.

Sadie was just three years old when she was diagnosed with stage 4 neuroblastoma, a very rare cancer affecting only about 200 children in the U.S. every year.

“Sadie’s eyelids were discolored,” Beth explained. “We had no idea what was wrong. She was so tired and weak. She would wake up from a nap and want to go back to bed.”

Beth and her husband Steven took Sadie from doctor to doctor, and no one could tell them what was wrong with their child.

Beth remembers sending Sadie off to school one morning, and a short time later getting a call from her teacher saying that Sadie’s eye just went “lazy,” rolling to the side of her head. They were sent to a hematologist who found a tumor on Sadie’s adrenal gland.

The little girl underwent an operation to remove the tumor and five days of chemotherapy all in less than two weeks.

Sadie began to lose her hair as a side effect of the treatments. Beth says that they told their eldest child, Max, that if Sadie’s hair was falling out, it meant she was getting well. Max would diligently check his sister’s pillow to look for a sign that she was getting better.

Beth was adamant that cancer was not going to take all of her daughter’s hair. “I cut her hair. That was my control,” Beth says. Twelve inches of Sadie’s hair was donated to Locks of Love.

While being treated as an outpatient, Beth and Sadie met another little girl named Genesis Reyes, a year older than Sadie, who had a recurrence of the same cancer that Sadie had. Genesis was completely bald and Beth learned that Genesis believed that without her hair, she didn’t look “like a princess anymore, like her doll.”

Beth started looking for a doll for Genesis but couldn’t find the right one. “There was nothing beautiful and sparkly, that’s what Barbie is known for,” Beth says. Sadie was in the hospital for a treatment and while she slept Beth did a search online. “I posted on Facebook saying that a friend of Sadie’s doesn’t feel like a princess,” she recalls.

At that time, the CEO of Mattel lived on Long Island, and his wife learned about Beth’s search. (Mattel’s new CEO doesn’t live here.) The executive’s wife had two prototype dolls made, one for Genesis, a Hispanic Barbie doll that was completely bald, dressed in a sparkly pink dress that looked just like her. The other Barbie doll had blonde fuzz on her head, like Sadie, whose hair had begun to grow back. She was also dressed like a princess in a beautiful pink gown.

“I wanted a doll for Genesis,” Beth says. “I didn’t ask for one for Sadie.”

Beth was asked to attend a press conference where the Beautiful & Bald Barbie would be given to Genesis but decided it was more important that she stay with Sadie.

“I got the doll and felt my job was done,” Beth says.

No one could guess that Beth’s original 2011 Facebook posting would be the spark of an online movement.

Jane Bingham and Rebecca Sypin, both personally affected by cancer, recently posted on a new Facebook page, “Bald and Beautiful Barbie: Let’s see if we can get it made.” Beth found their post and contacted them with words of encouragement. “I told them I did it, you can, too.” Jane and Rebecca were surprised to learn that Sadie also had her own Beautiful & Bald Barbie.

They credit Beth with starting the movement and told her: “You’re the “other mom”; you’re the one who inspired us.”

So far more than 134,000 people “like” the Facebook page and celebrity supporters include Marlo Thomas and Denise Richards. Beth is hopeful that eventually Mattel will reconsider making the doll. With over a million page views in just one week, how can the toy company ignore them?

“They’ve made tattoo Barbie, wheelchair Barbie, breast cancer Barbie, astronaut Barbie and pregnant Midge already,” Beth says. “Why not this doll?”

During her treatment, Sadie endured six rounds of chemo, radiation, a stem-cell transplant and fought hard through the pain. Beth just learned that Sadie has a severe hearing loss, but she is doing well now–and that’s what is important.

Beth believes that this special Barbie doll can help a sick child deal with the emotional toll of losing their hair. “We are supposed to have hair; if you don’t, people assume you’re sick,” Beth says. A bald Barbie doll gives the child something tangible. “They can see it, touch it and visualize it,” she says.

Why Mattel won’t reconsider its refusal is baffling to Beautiful and Bald Barbie advocates since the toy manufacturer introduced the sparkly “Pink Ribbon Barbie” in 2006, which, in Mattel’s words, “celebrates the incredible strength, beauty and resilience of women.”

What about children with cancer?

The giant toy company’s response hasn’t changed: “Mattel does not accept ideas from outside sources.”

Beth was asked to be an administrator on the official Beautiful & Bald Barbie Facebook page, and shares the responsibility of overseeing the page content with Jane, Rebecca and three other women, all with a different reason for wanting Barbie bald.

“I’m the one who started it, but my focus now is getting back to living life,” Beth says. With Sadie in remission and attending pre-K and Max in third grade, Beth has time to focus on just raising a normal family and assisting her husband with their business in Freeport, Arrow Express Packing and Shipping.

Being the mother of a child with cancer has given Beth a new perspective on many things, she says. “You don’t have time to think, you just do.”

And that’s exactly what Beth did when she found Genesis Reyes the only truly Bald & Beautiful Barbie in the world. “My main goal was to get this doll for Genesis and I did.”

To contact Beth, email bfreifeld1@gmail.com or visit www.facebook.com/#!/BeautifulandBaldBarbie

How Peter got to fulfill his wish is an uplifting story that involves many selfless people who came together for Peter and stayed together to make other patients’ futures take flight.

Joe Howley, a volunteer pilot from Greenwich, Conn., had been flying Peter between Bangor and Boston for his chemotherapy treatments and on their more than 20 flights together had formed a bond, so Joe volunteered to take Peter to see his grandfather.

A few days after his final flight home, Peter passed away.  Joe honored him by memorializing Peter as Patient No. 1 for the organization that Joe had recently founded called Patient AirLift Services (PALS).

Based in Farmingdale, PALS arranges free air transportation for people requiring medical care or other humanitarian assistance. Volunteer pilots not only donate their time and their aircraft, they pay for the jet fuel, landing fees and any other expenses, including hotels and meals.

Since PALS’ inaugural flight in May 2010, their pilots have logged more than 700 flights. This year they hope to double that number, which would give PALS the distinction of being the fastest growing volunteer pilot organization in the U.S.  Right now, they cover the Northeast and as far west and south as Ohio and Virginia.

Connecting people to pilots and overseeing the day to day operations of this massive undertaking is Executive Director, Eileen Minogue. “Our mission is big,” she says, “We will be a national organization within five years.”

With her energy and background, Eileen could be right. As Eileen introduced me to her staff, she was quick to credit each and every one with being an integral part of PALS’ rapid growth. What they’ve accomplished so far is impressive.

For passengers, PALS services are more than just a plane ride: they provide hope. Often these patients have had to face the prospect that the treatment they need is too far away and their health insurance won’t cover the costs of transportation, temporary housing and travel expenses. That knowledge can be a devastating revelation. For others who are living on borrowed time, PALS provides a faster way to reach medical facilities which is crucial, especially for someone needing an organ transplant.

PALS aircraft give patients access to more than 5,000 privately owned airports across the U.S., whereas commercial airlines only reach 500 airports. For qualifying patients, Eileen says there is no waiting list.

Once a jet lands, another PALS network steps in.  Known as Auto Pilots, volunteer drivers provide ground transportation from the runway directly to the medical facility, ensuring that the patients arrive at their destination quickly and at no charge.  Auto Pilots are an essential part of the PALS mission, and together the air and ground transportation team can save patients untold hours of travel time while relieving them of a huge financial burden so their focus is centered on getting well.

“Too often,” Eileen says, “free transportation isn’t even a consideration for some people. Our service can make their lives a lot easier. It helps keep a semblance of normalcy. People can keep their jobs.”

PALS also provide air transportation for people who aren’t able to take commercial flights for a variety of reasons. PALS make flights available for military personnel to reunite with their families, and wounded veterans are flown to the medical facility that provides the best treatment for their recovery.

Right now Eileen’s biggest hurdle isn’t finding volunteer pilots or “auto pilots”; it’s spreading the word about PALS’ free services to local health care professionals and institutions, letting them know that they can refer patients to them at no cost to the patient or referring institution.

Eileen estimates that a typical flight costs about $350 in outreach coordination and depending on several variables including the type of aircraft and flying distance, costs can range from $300 to $1,500 per flight, which is borne by the pilot.

PALS operates on grants and private donations secured by Eileen, her board of directors and staff.  Eileen’s expertise in fundraising is well-known in her hometown.  She is the current president of the Massapequa Community Fund, and has helped raise more than $1.6 million and distributed almost $1 million in scholarships and grants in the Massapequa area. Eileen got tapped for this role when she reconnected with her old friend, actor Billy Baldwin, at a high school reunion; Baldwin had helped to establish the fund in 2001.  “He told me that he heard I was good at fundraising,” Eileen says with a laugh.

Her exceptional history as a fundraiser, coupled with her ability to recruit outstanding people has brought an unrivaled humanitarian service to Long Island. The satisfaction of being a part of an organization that gives hope to people in desperate need is not included in most job descriptions. For Eileen Minogue it is a way of life.

For more information or to volunteer, call 888-818-1231, or go to www.PALServices.org or email Eileen at minogue@palservices.org

A year later, her plan came to fruition when she founded the E Joy Community Resource Center, Inc., based at the Friendship Baptist Church in Roslyn Heights, where Audrey’s husband, Victor, is Pastor. Audrey named the resource center after her late mother in law, Edwinor Joye Lewis.

“We had a great relationship,” Audrey says, “I wanted to honor her memory.”

Audrey’s leadership and hard work has enabled the E Joy CRC to grow tremendously and offers hunger relief as well as addressing the long-term health and safety concerns for many Long Islanders.

What started in 2009 with 50 families at her Roslyn Heights location has grown to 200, and E Joy’s reach now includes Manhasset, Great Neck, Albertson, Mineola and Williston Park. In Suffolk County, the E Joy CRC in Holbrook is providing services to about 50 families.

“We give what we can, to whom we can, as much as we can,” she says.

The recession continues to impact more Long Islanders who then need E Joy’s assistance because they simply can’t stretch their paychecks far enough to make ends meet.

“We are seeing people who are working and never needed assistance before,” Audrey says.

Asking for help for something as basic as food and clothing can be both awkward and humbling, especially for the employed. In many cases having a job can be a Catch 22, making a potential candidate for assistance ineligible for government-supported programs such as food stamps, yet even with a job they are unable to afford the basic necessities. Thankfully, through E Joy, they can obtain enough food to feed their family. For those that have never even contemplated applying for food stamps, Audrey provides weekly on-site SNAP enrollment.

Audrey’s original concept was to have a one-stop resource center in a central place that would provide a variety of services. She has accomplished that goal and more. In addition to the E Joy CRC food pantry and the Catholic Charities food commodity program, E Joy distributes clothing and school supplies, provides a job readiness program and offers ESOL workshops (English for Speakers of Other Languages) and a summer lunch program for children. Another priority for Audrey is helping senior citizens with their special dietary needs and keeps them connected to the community by providing a place for them to gather and enjoy exercise classes and various workshops.

For 2012, Audrey plans to offer a weekly computer class that will be equipped with laptops that were refurbished and then donated by Friendship Baptist Church members. Although E Joy CRC is not directly affiliated with the church, Audrey says that they help each other out when needed.

Providing services to the formerly incarcerated to help get them back into the workforce and the community is another program that Audrey is planning to introduce this year.

As a growing number of Long Islanders are experiencing the effects of the recession, Audrey believes it is essential to network in the community and establish new connections and collaborate with other businesses and non-profits.

“No organization is an island,” she says. “You can’t function by yourself.”

E Joy’s small administrative size hasn’t been a deterrent to its rapid growth, it has made Audrey more nimble than some of her larger counterparts.

“I’m not restricted,” Audrey says. “If I see a need, I can address it immediately.”

For more information, to donate or volunteer, email: Sote2@msn.com, call 631-624-0383 or go to www.ejoycrc.org

Like most reputable trainers, Kathleen believes in positive reinforcement, using praise and rewards, rather than punishment, to teach dogs right from wrong. A lot of trainers share that approach, but Kathleen is unique in other ways.

“I’ve always had an interest in behavior issues, and I love being able to show people how to work with their dog,” Kathleen says.

She began a business offering dog training and providing private consultations for handling pets’ behavior problems. Kathleen says that her practice, Zen Dogs, has blossomed. Now many dog owners seek her out when they have nowhere else to turn.

“My philosophy is to teach our dogs what we want them to know,” she says.

About three years ago, Kathleen began a community outreach program called Break the Chain. The program’s mission is to assist both owners and their dogs to improve the animals’ quality of life. Break the Chain wants to end the practice of keeping dogs chained and left out in the elements, devoid of human contact.

Most of the dog owners who Kathleen visits haven’t asked anyone for help, but that hasn’t stopped her from venturing into impoverished neighborhoods on Long Island and offering her assistance. For Kathleen, the potential danger of going into a high-crime area outweighs the benefits of helping both the owners and their dogs. Kathleen not only takes the dog’s well-being into account, she also tries to help the owners and has brought them food, clothing and other necessities. “They need support, too,” she says. “People have lost their jobs and can’t feed their kids, no less their dogs.”

By adapting the program to each owners capabilities, Kathleen and her volunteers teach owners the skills they need to care for their pets. Having the dog spayed or neutered is a program requirement, so Kathleen often provides the service free of charge. So far, more than 60 dogs have been neutered since Break the Chain began.

Sometimes Kathleen introduces a weight-pull contest as a way to rekindle the owners’ interest in their dog. She says these techniques have been very successful in boosting the bond between the pet and its owner. Weight-pulling is an obedience-based sport that requires skill, focus and training, and it’s enjoyable for the dog.

“It’s safe for the dog, and the owners get a kick out of it. It’s turned out to be a really productive thing. They love it! ” she adds. “We see the spark in the owner’s eye.”

Kathleen then offers to bathe and groom the dog. She’ll supply flea treatments, de-worming and food. Kathleen’s goal is to have the owner bring the dog into the home. If the owner isn’t ready for that important step, she’ll supply a dog house in the interim. If the yard has no fence, Break the Chain will provide a cable run so the dog can move around more freely outside.

Kathleen has become a lifeline for these animals and has had a huge impact on how their owners treat them. Dogs once left outside to lie in the dirt are now indoors sleeping in bed with the kids.

“We see this every week. This is not an isolated story,” she adds. “Compassion is contagious.”

Kathleen and her assistant and trainer, Cathy Langevin, believe it’s important to include family members in the training and that children should learn how to play with the dog properly, By involving them, they hope the dog will be treated as a member of the family, breaking the cycle of abuse and neglect.

Kathleen is very patient and persistent. She stays in contact with dog owners whom she believes would benefit from the program until she can convince them to have their dog neutered. Break the Chain now has more than 100 dogs in the program.

“It’s taken us a year to get some dogs neutered, but we go every week,” Kathleen says. “We are always respectful [to the owners] and they know we come through.”

“I have always spent way more time with dogs than humans,” Kathleen admits. “If we don’t help them, there really isn’t anyone else out there.”

Kathleen’s wish is for all dog owners to feel love and pride for their dogs because they will always receive that love in return. She is committed to building that special bond between a dog and its owner.

“I want to be part of the solution,” she says. “My favorite thing to do is walk with my dogs. I want everyone to enjoy their dogs as much as I do.”

For more information go to www.facebook.com and search Break the Chain Program, www.zendog.biz, e-mail zendog@zendog.biz or call Kathleen at 631-650-6328. If you’d like to donate items (all of these are for larger dogs), their wish list includes new or used bedding and blankets, crates, dog food, chew toys, cable runs and igloo dog houses. Break the Chain also accepts cash donations, call Kathleen for details.

Participating in a team sport is a rare opportunity for too many of these children, thought Ellen Viola Thalhamer III, an applied behavioral analyst (ABA) and special education teacher who specializes in home education and training parents in ABA practices. Ellen had found that many parents were frustrated that they could not find sports programs geared to their children’s needs.

“The special education league wasn’t organized enough for children with autism,” Ellen says. That’s why she chose to start her own program. She knows first-hand the emotional rewards from working with children with autism and she wanted to share that joy with others.

Ellen’s first connection with a child with autism was when she was just 13 years old. She had volunteered to play with a child who was said to have “behavioral problems.” Being with that child was a life-altering experience for Ellen, and she vowed to dedicate her life to helping children with autism. “It was my calling,” she says.

Three years ago, Ellen founded Team Heroes, a sports team for children with autism.

“I felt bad for parents who had nowhere to go,” she says. The program, which is run in an ABA type format, is modified to fit each child’s individual needs. Many studies have shown that specific ABA techniques can help children with autism learn how to communicate and develop relationships.

Team Heroes offers soccer and T-ball programs for kids with autism between the ages of three and nine and their siblings. The nine-week program costs $35 per child and is held in Huntington area schools. Ellen said special accommodations will be made if a family needs financial assistance, and that no one will be turned away.  

Playing sports is considered a bridge to socialization and can actually improve autistic children’s behavior in groups. Soccer can be played by children as young as three years old, and while they may be running and laughing during a game, they’re also learning how to listen and follow directions, how to take turns, and how to play together as a team. Children with autism may also benefit from the individualized instruction giving by Team Heroes’ coaches and volunteers, which include Ellen’s sister Tracy, a coach at St. Joseph’s College. Ellen calls Joan Childs, the board’s secretary, “the heart of Team Heroes.” Joan’s son, Joey Governale, the board vice president and coach, is also a tireless advocate for these children.

Forming a not-for-profit can be a challenging and expensive undertaking, but that didn’t deter Ellen.

Hearing a parent exclaim, “I wish I had known about this last year!,” makes all of Ellen’s sacrifices worth the effort. For Ellen, who’s single and doesn’t have a child of her own, seeing her program grow as more parents learn about Team Heroes is exhilarating. “Each year we’ve doubled in size,” Ellen says proudly. Parents also benefit from the program by making new connections and sharing their challenges and victories with one another.

Ellen is now studying for her Board Certified Behavior Analyst certification, which is the highest certification in the ABA program. When finished, she has plans to form a Team Heroes winter program. For now, Ellen is anxiously awaiting the start of the spring 2012 season.

“I miss it,” she says. “I love waking up on Saturdays!”

Team Heroes is currently seeking volunteers to assist them when the season starts. They’re especially looking for college students studying to be special needs teachers.

Great teachers have the power to change lives and Ellen’s dedication to children in the autistic community is uniquely noteworthy. By forming a non-profit to benefit this growing population, she has pledged her allegiance to Long Island children. Ellen’s reward is to witness the success stories she helped create by giving these families hope that for their children the game is not over—it’s game on!

To contact Ellen, email EllenViola@hotmail.com or go to teamheroessports.webs.com.  Ellen also recently published her third children’s book in her “I Love to Pretend!” series, which are social stories for children with autism. For more information, go to www.ILovetoPretend.com.

When Bella was about 18 months old, Maria took her to a “mommy and me” class at a local Gymboree and noticed that while the other children ran around the room, Bella navigated the play area by crawling over the different surfaces.

When Bella attended nursery school, she seemed to have difficulty with concepts like color recognition and letter/number identification and had difficulty navigating stairs and ramps. As a special education teacher, Maria knew her daughter wasn’t learning disabled, but sensed something was not quite right.

It wasn’t until Maria and her friend had an Easter egg hunt with their children that she was certain Bella had a problem. The other child found all the eggs while Bella found none. “Alarms starting going off,” Maria says, “I knew something was definitely wrong.” She took Bella, who was then 4, to an ophthalmologist. He took one look into Bella’s eyes and immediately said there was something seriously wrong with her retinas. “He handed me his cell phone and said, ‘Start calling your family to see who has eye diseases.’ ”

After Bella was examined by several doctors, her parents took her to the University of Iowa, where she was diagnosed with Leber Congenital Amaurosis (LCA), a rare genetic disorder that results in the progressive loss of vision. Those with LCA eventually go blind, typically when they’re in their late teens to early twenties. The condition is extremely uncommon, and Bella had an even rarer form of it, RDH12-Related LCA.

RDH12 is a protein in the eye that recycles molecules that are important to the eye’s ability to detect light. Without it, the cells of the retina die. Bella’s doctor tested to see if Bella’s retinal rods captured any light.

“She flat-lined,” Maria says of the test results. The Fiores were told that Bella lacked peripheral vision, was completely blind in dim to dark light, was sensitive to bright light, had difficulty with color contrasting, and lacked depth perception.

Only 1,800 people in the entire world and less than 100 in the United States, have RDH12-LCA. Classified as an orphan disease, it has received almost no attention by the research community.

“We were told there’s nothing they could do. There was no hope,” Maria says. “We were freaking out.”

Instead of giving up, Maria and Mike began searching for information about LCA. There wasn’t much available, but they learned about a conference in Philadelphia that was being hosted by a retinal foundation in July 2010. The Fiores attended along with about 200 other people all on a mission to find other families with RDH. One mother, desperate for answers, Maria says, grew impatient and stood up and asked if there were any other families with an RDH12 diagnoses.

The Fiores and three other families raised their hands. “There were four of us in the whole world,” Maria says. The three families from the U.S. and one from Belgium immediately formed the RDH12 Fund for Sight to raise awareness and funds for research. Maria says since they started the fund, the number of families has grown to nine worldwide.

Even with her experience as a special education teacher, Maria still struggles with her daughter’s diagnosis and the rarity of her disease. “In 12 years I’ve [taught] one blind child,” she says. “While I was teaching, I was thinking about Bella and I was trying to hold it together.

“Bella knows her eyes are special, and that she sees differently, but the hardest part is not knowing if she’s going blind,” her mother adds.

Bella has been classified as visually impaired and is learning Braille. Her Orientation and Mobility teacher shows her how to navigate stairs and use playground equipment safely and will continue to educate her about the skills and concepts she’ll need in order to travel independently and safely in her home, classroom and in the community

The Fiores don’t want to overload their young daughter with too much at such a young age and haven’t determined when Bella will learn how to use a cane. “These are decisions we have to make,” Maria says.

In school Bella was struggling to read because she needed more light, so she now has a lamp at her desk. When she goes outside, she always wears dark sunglasses to reduce her exposure to sunlight since it’s been suggested sunlight produces toxins that the eyes cannot remove without RDH12.

“Bella has no depth, no peripheral vision and is blind in dim light. She can’t see anything above or below her head,” Maria says.

The Fiores focus is on raising funds for research. They found a scientist, Dr. Jean Bennett from the University of Pennsylvania, who is conducting research on RDH12 and in March, the fund presented her with a check for $70,000 to start pre-clinical proof on a gene therapy cure. They need to raise another $250,000 for the next phase, so the families are busy planning a variety of fundraisers.

“Every family does it differently in the group,” Maria explains. “We host a golf outing and a dinner dance.”

Maria is grateful that Bella has her vision for now. Bella is encouraged to be like any other first grader, and is given the opportunity to explore, discover and learn about herself and the world around her.

“When we look at our daughter we see a beautiful child, who no matter what, will be prepared to face the world independently. She plays soccer, is an avid swimmer, and is a Daisy Scout. She loves Lady Gaga and dancing, has her first crush, and luckily has a great sense of humor.

“To say that we are scared for her is an understatement,” Maria says. “We will do all we can to save her vision. But in the end, we are also determined for her to live a full and wonderful life.”

To read more about Bella, go to www.Bellas-Buddies.com, or go to www.rdh12.org or email Maria at mfiore@greatneck.k12.ny.us

Utterly devastated, Lori went to her son’s side, and they have been inseparable ever since. Only a few weeks prior, she had taken Robert to another hospital where Lori was told he had a migraine headache and he was sent home.

“He might have had the tumor for 10 years,” she says. “No one had ever connected his symptoms before.”

Only a week after his emergency surgery, Robert had to undergo two more operations. In the first one, Lori explained that the doctor literally unfolded his brain, performed a biopsy and refolded it. The diagnosis was that his tumor was inoperable so another surgery was scheduled to put in a shunt to drain the fluid accumulating in his skull into his abdomen.

Lori was the vice president of a New York City public relations agency and had been with them for more than 20 years. While trying to take care of her son, Lori’s employer was regularly asking her when she would be able to return to work. For Lori, however, leaving her son was not an option.

Robert was very aware that his mother was a successful businesswoman who worked hard to attain her position at the agency, and he was extremely upset that she was not working. Lori says that Robert suggested she open her own public relations business. Lori had vast experience in PR and marketing, specializing in book authors and small businesses. “He told me if I started my own, he would stop worrying,” Lori says. She knew that Robert still had a long road ahead of him involving more surgery, chemotherapy, radiation and physical therapy, so the idea of going out on her own was taking root.

At the end of November, while Robert was recuperating from surgery and getting ready to start chemotherapy, Lori knew she could not go back to her job and officially resigned.

“I was thinking about how I was going to run my business,” Lori recalls. “Robert and I talked about it, too. We both decided that you just can’t worry about being sick.”

Many people report feeling isolated, lonely and desperate as they endure brain tumor diagnosis, treatments and rehabilitation, but this mother and son team worked their way through it. In a way, Lori had to reprogram her own brain and how she thought about everything in her life.

“I’m either a genius or I’m insane,” Lori says with a smile. Not one to waste time, she immediately registered her URL and had her first client by mid-December.

At first Lori worked from home to accommodate Robert’s recuperation and rehabilitation schedule.

“Everything grew from that,” Lori says. She rebuilt many of her connections from Linked-In but believes another reason for her success is very simple. “I have been nice to every person I have spoken to for the past 25 years,” she says.

Her business took off but that brought a new set of challenges. “I know how to make money and run a business,” Lori says, “but working at home was impossible. I was out growing my house and needed to find office space.”

She found a great location less than half a mile from her house, and now Robert is doing so well, he accompanies Lori to work everyday. Their set-up, which includes Lori’s intern Christina, is professional yet homey. Robert is a charming and very funny young man, he is his mother’s alter ego, her muse, her foil. Robert has to come to terms with his post-surgery identity, just like his mother had to. Although Lori is no longer the VP of a New York City PR firm; she is the president and owner of her own thriving Long Island agency. Robert is amazingly candid about what he’s endured and even has a sassy rejoinder to anyone who might be impatient if he takes a little longer to finish a thought: “I had brain surgery. Can you give me a minute?” The line is delivered with perfect timing, like a professional comedian. Robert launched into a comedy skit about Lori’s lack of culinary skills and ad libs: Boy Survives Brain Tumor: Killed By Mom’s Cooking. Everyone laughs.

There are no apologies from either mother or son for their office arrangement and their schedule, which includes working on the weekends to keep a routine, but Lori doesn’t mind in the least. Attitude is everything. “I needed to be strong for Robert,” Lori says.

Recently Robert’s doctor’s gave him the go-ahead to start fishing again. Lori and Robert have taken a weekly fishing trip on a party boat out of Captree since he was 4 years old. “Fishing has always been our passion. It was the one thing Robert always asked about when he was sick,” she says.

For both Lori and Robert, life today is precious and full of hope. “There are two things that happen,” she says. “A: you worry they’re not going to make it; B: you wonder if you should have found it [the tumor] earlier.”

“I learned that you can’t do that and lead any vibrant kind of life,” Lori says. “We try to laugh a lot because, believe me, there were plenty of tears.”

To contact Lori, go to ThePRFreelancer.com, Facebook: The PRFreelancer, email: lori@theprfreelancer.com, or call 631-539-4558.

Recently Stony Brook University’s Staller Center, one of Long Island’s premier venues, was seeking a creative person to serve as its development director. As luck would have it, one of Stony Brook’s MBA students, Katie Stockhammer of Ronkonkoma, was looking for a career in the arts in an educational setting. It was the perfect match.

Early on, Katie had established herself as a key player at the Long Island Chapter of the Leukemia and Lymphoma Society (LLS), where she was their campaign director. At LLS Katie managed a multi-million dollar portfolio, oversaw a staff of five and a volunteer roster of more than 5,000 people. She also had a very personal connection to LLS.

In 1998, when she was just 16 years old, Katie noticed a swelling above her collarbone. “I told my mother about it, and then immediately had a CAT scan,” Katie says. They found a tumor in her chest and she was diagnosed with Hodgkin’s lymphoma. Katie and her family were living in Florida at the time, but within a week they were at Sloan Kettering in New York City where Katie underwent chemotherapy treatments. She continued with a regimen of radiation, a stem cell harvest procedure, surgery and more. Katie faced her cancer head-on, even dying her hair blue, knowing that all her hair would fall out. Though she was just a teenager, she sensed the emotional toll her illness was taking on her parents. “It was easier being me than being them,” she recalls. “There was nothing they could do [to make the cancer go away].”

Katie says her fight against Hodgkin’s gave her a different outlook on life. “I learned so much about myself and the people around me,” Katie adds. “It gave me a lot of perspective.”

Her experience also inspired her to help raise awareness about LLS and advocate for others with the disease.

“I was really passionate about working at LLS,” she says, “and I enjoyed the fundraising and development side of my job.”

The LLS organization was very close to her heart, but Katie wanted to pursue a career in the arts. “I loved my time there but I was ready to go to the next step,” she says. “I’m a very ambitious person, and I wanted to see where it could take me.”

Now as the director of development, she has a lot on her shoulders. She’s responsible for securing the funds to support the Staller Center and the university’s departments of art, music and theater arts, as well as its faculty performers. With her deep passion for the arts and her experience in fundraising, Katie sees her role as an ideal opportunity to be an integral part of a team that will lead the Staller Center to their next phase of development.

Katie also seeks to ensure that the center continues to bring high caliber shows, films, arts education and culture to the Long Island community through the fundraising, membership and donor stewardship activities that she oversees.

Though Long Island may still be mired in the economic downturn, corporate giving remains a mainstay for the center. “My role is to elevate their giving and to help the center reach their long term and immediate needs,” Katie says. She’s confident that people interested in the arts will continue to support the center, and by keeping the offerings at Staller top notch, they will attract a steady audience.

Her enthusiastic approach to her work will likely result in new and innovative ideas that will create meaningful art experiences all Long Islanders can enjoy. “This is the perfect world for me,” Katie says.

For more information go to www.stallercenter.com. To contact Katie call 631-632-4062 or email: katie.stockhammer@stonybrook.edu

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