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Wish to Visit Mickey Comes True for 3-Year-Old

By Alison Walkley
Posted: 11/25/2008 08:52:57 AM EST

The Make-A-Wish Foundation has granted a 3-year-old Fairfielder's lifelong wish to visit Mickey Mouse and his friends at Walt Disney World in Orlando, Fla.

Ethan Takacs was diagnosed with spinal muscular atrophy soon after he was born. Ethan now represents a medical anomaly, being that most children afflicted with SMA do not survive past the age of 1, according to his mother, Kelly Takacs.

On June 13, 2005, Kelly and her husband, Detective Jason Takacs of the Fairfield Police Department, welcomed their first son, Ethan, into the world. The pride both parents felt soon turned to concern, however, when, six weeks later, Kelly began to notice that her child was not moving the way other babies moved. By Oct. 6 of the same year, the Takacs found out why.

According to Families of SMA's Web site, fsma.org, "Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common 'rare disorder': approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers."

Kelly explained that there are different categories of SMA that are diagnosed based on how severe someone with SMA is affected. Ethan was diagnosed Type 1, the most severe.

"This was earth-shattering," Kelly said of the diagnosis. "But we went to see the lead doctor on SMA in New Jersey, and he gave us so much hope."

The site continues, "SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one's body i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems."

Ethan's mother corroborated this with her son's own story. "We have to suction out his lungs because his respiratory muscles don't work. He's fed through a feeding tube and he sleeps with a ventilator," she explained.

Fortunately, the brain and its activity remains unaffected.

"Now 3 years and a couple of months, he's much like any other child his age," Kelly said. "He loves pirates. He loves Mickey Mouse. He uses a computer with this button he clicks. He's learning how to use his new power chair. He's a really special little guy."

Since Kelly gave birth to twins Aidan and Brady, now 1 year old, Ethan has become even more stimulated on a daily basis. "The twins love Ethan to death," his mother said.

Raising Ethan has not been easy. Kelly had to stop working to care for her son full time, even with the help of nurses during the week. Luckily, she said that the medical bills have not been "tremendously bad," though some expenses do "get denied."

"We had a fundraiser in 2006 when we were looking into getting a special van. Ethan's completely floppy, so he has to go into a van when we transport him."

She said the help and support she and her family have received from the town of Fairfield has been priceless.

"[Police] Chief [Dave] Peck loves Ethan and is so good to him. He went to Disney World and came back with all sorts of toys for him, like a Mickey pirate," she said.

Peck himself said, "It's a situation that I've been a part of since Ethan was born and diagnosed. Anything that comes my way that I think he'll like I accommodate."

Peck mentioned that last year when Fergie of the Black Eyed Peas performed in Times Square for New Year's Eve, he was told Ethan responded to her music. "My nephew actually knows the Black Eyed Peas and I was able to get some autographed pictures and CDs for Ethan. I try to keep him up on what's going on."

The chief also explained that the members of the department take care of each other. "There have been times when Jason's needed some extra vacation time to spend with his family and everyone rallied around him to make it happen. It's neat that, as an organization, everyone does their part to step up to the plate to help."

Peck noted that he has a picture of Ethan up in his office and he tries to do "little things to keep in touch" all the time.

Jason said he couldn't have been more "indebted" to the department, Peck particularly. "Without the support of the department and Chief Peck, there's a lot that wouldn't be possible. I am so grateful. We have ongoing, day-in and day-out support which I need. We're in a unique situation. He's been great," he said of Peck. "He's done more for us than even some family members would do."

Knowing of the Make-A-Wish Foundation before having her own special-needs child, Kelly began reading up on the trips the foundation offers. "I discovered that kids become eligible at the age of 3. Not that we're thinking that we have to do this now, but you never know. We really live day by day with this," she said, explaining how they came to apply for Ethan's wish to be granted.

Jason said Tuesday, "I think he's the luckiest little boy I know. This has been a long time coming. The process started last year around this time. My wife and my mother-in-law looked into it, and we went through the application process, explaining our situation and everything. We were fortunate enough to be chosen."

The detective said that they would be leaving just before Thanksgiving.

"Even though Ethan can't speak, he's going to go nuts seeing all of the characters he loves. This is going to be a pretty cool trip," Kelly said. "Because he has breathing issues, though, I didn't want to go on an airplane. So, Make-A-Wish will be giving us an RV for the trip to Florida." They will be going this Thanksgiving in the hopes that the park will be less crowded than usual and their family members who have taken off from work to accompany them will be available. They will be joined by their grandparents, James and Debra-Lee Greenwood of Monroe, among others who will fly down.

"Just about everyone on both sides of our family are going," Jason said. "This is the first time for this kind of trip, so we need all hands on deck I'm excited for him to get down there."

"Everybody wants to see Ethan's reaction when he gets to Disney World," Kelly said. "I'll probably be crying the whole time, just knowing how happy he is Even though he can't smile, we know his expressions. When he lights up, it's something special."

The foundation is putting the Takacs up at the Give Kids the World resort, intended specifically for Make-A-Wish children and their families. Both Kelly and Jason are thrilled to be able to present Ethan with such an unforgettable experience.

"It can be hard," Kelly said, "but he's my kid. I'll do everything I possibly can for him."

"We were told he wouldn't live past 18 months, and now he's 3 going on 4," Jason said. "He should give a lot of other kids in his situation hope."

For more information, or to donate either to the Takacs family or SMA research, contact Kelly at kellytakacs3@gmail.com. Visit Ethan's own Web site at
our-sma-angels.com/ethan. 

Hope for families with children suffering from Spinal Muscular Atrophy
 

(WTNH, Oct. 16, 2006 10:00 PM) _ Some Connecticut families are coping with a rare disease that strikes children early.

There is no cure for Spinal Muscular Atrophy but that's not stopping parents like Jason and Kelly Takacs.

15-month-old Ethan Takacs is learning to spell his name, one trying minuscule move at a time.

Ethan has Spinal Muscular Atrophy, SMA, a rare disorder that weakens his muscles.

"He was diagnosed and right away.  I said well I'm just not dealing with this. We're not going to take this without fighting," says Kelly Takacs.

Dr. Thomas Homa, Pediatric Healthcare Associates, says,"Basically it's a genetic disorder that causes a problem with
neurons, they fail to mylenate and they degenerate over time so these babies can't move."

Dr. Thomas Homa is Ethan's pediatrician. He credits Kelly and Jason Takacs's 24 hour aggressive approach in improving their son's quality of life.

Dr. Homa says,"They live longer now than they used to because they are given aggressive respiratory therapy."

"Oddly enough, loving him and taking care of him day to day isn't what's tough.  It's really not.  It's getting the things that you need for him that can be tough," says Jason Takacs.
 
 Things like this sophisticated swing designed to strengthen muscles and medical equipment can be costly.

That's where the Angelo James Magliocco Foundation comes in in memory of a baby boy who lost his fight to SMA.

The baby's father Angelo Magliocco says,"We just want to be able to help them with whatever we can help and
that's the whole goal of our foundation to help Connecticut families who are raising children afflicted with SMA." 

Raising awareness of the incurable disease is an ongoing effort for little Angelo's parents.    
 
 His mother Jenifer says,"We asked them 'Well what is this?' and they basically don't you give you much hope."

Hope and faith are what bonds these families together and love gets them through the next phase.
       
SMA is a recessive genetic disease.  That means both parents carry the abnormal gene and pass it onto their child.

The child has one in four chance of inheriting SMA.

For more information: http://www.angelojamesmaglioccofoundation.org/

Local family foundation fights SMA

Karen Kovacs Dydzuhn, Staff writer
September 28, 2006

In the early morning hours of Jan. 12, Angelo and Jenifer Magliocco held their seven-week old son, Angelo James, as he took his last breath.

Only a few weeks earlier, the infant had been diagnosed with Spinal Muscular Atrophy (SMA), a rare neuron-muscular disease. SMA affects about one in 6,000 people in the United States today and is passed on genetically when both parents are carriers.
 
The Trumbull couple decided to turn their loss into a way to help others with the disease.

This Saturday, Angelo and Jenifer will officially announce the formation of the Angelo James Magliocco Foundation at a fundraising dinner.

The public is invited to attend the gathering at Marisa's Restaurant at 7 p.m.
 

Jenifer, a graduate of St. Joseph's High School, is the daughter of Jim and Joan Duda of Monroe.

Angelo is a Trumbull native.

The couple said their main goal in establishing the foundation in honor of their son is to help other families in Connecticut who are affected by SMA.

"Our faith really got us through this," Angelo said. "We look at it like we are blessed to have an angel looking over us now. And, we were blessed to be able to hold him for two months."

Jennifer agrees. "We are trying to make something positive out of something negative," she said. "If we can help another child's quality of life, we have succeeded."

The Maglioccos have personally experienced what couples go through in trying to care for a child with SMA.

With grant money offered through the foundation, the couple hopes to ease the burden, they said.

Angelo said the foundation expects to distribute three grants each year. These funds could be used to purchase a wheelchair for an afflicted child or simply help to pay the family's bills.

"If we could help pay someone's mortgage for one month, that would be great," Angelo said. "We want to help make their lives easier. We want to do anything we can to make the child's life more comfortable."

Children with SMA have difficulty swallowing, crawling and walking. Their head and neck control is adversely affected.

Following their son's diagnosis, the family brought several machines to monitor Angelo James' oxygen level into their home. Respiratory failure leads to many of the SMA deaths, Jenifer said.

"It was so nerve wracking," she said. "You were always looking at this machine, and if the oxygen level went down too low, it would start to beep."

The Maglioccos were grateful, however, to have extended family members around to provide physical and emotional support.

They realize, though, that not every family affected by SMA is as fortunate as they were.

"We want to raise awareness about the disease, but we really want to just be there for the families," Angelo said.

The recipient of the foundation's first grant this year is Ethan Takacs, son of Kelly and Jason Takacs of Fairfield.

The Maglioccos learned about the Takacs family's struggle with SMA when they brought Angelo James to Bridgeport Hospital for tests last December.

They later realized they knew each other from growing up in the Trumbull area.

Ethan, who turned 1 in June, has the same type of SMA as Angelo James, Jenifer said.

"This family is very special to us," Angelo said. "They really helped us to learn more about this disease and find doctors in this area."

Like most people outside the medical profession, the Maglioccos had never heard of SMA before their son was diagnosed.

Jenifer said that though her obstetrician asked standard questions about their family's medical history when she first got pregnant, they were never tested for SMA.

Genetic counseling, which is typically recommended for older couples, was not suggested because Jenifer was 32, and Angelo was 30 at the time.

The couple has since learned that, in order for a baby to be born with SMA, both parents must be carriers of the disease.

In every pregnancy, there is a one in four chance that the child would be affected.

One of the foundation's goals, said Jenifer, is to make young couples aware of the need to be tested for SMA.

"You think it can't happen to you, but it can," she said. "There was no one that we knew of in our families who had this disease."

She would like to see SMA included as one of the many tests given to newborns before they are released from the hospital.

Low activity level

In the days immediately following Angelo James' birth on Nov. 18, 2005 the couple described their son as "laid back" and "very relaxed." However, in looking back, they can recall always being concerned about his well being.

Though he exhibited some movement, it was minimal, Jenifer said.

It was while watching a scene in the movie, "Bringing Up Baby," where Diane Keaton is frantically trying to keep a squirming newborn on the changing table, that Jenifer realized something was seriously amiss with her own son.

Coincidentally, her husband had also just heard from a friend about his infant's extensive movements.

"Call it our instincts as parents, but we knew something was wrong," Angelo said. "It just didn't feel right."

After examining the baby, pediatrician Dr. Jay Esposito advised further testing at Bridgeport Hospital.

Angelo recalls how Dr. Esposito pulled him aside and said that he would need "to be strong" for his wife. The best-case scenario, the doctor said, was that a virus caused Angelo's symptoms. However, the worst-case scenario would be a diagnosis of a neuron-muscular disease.

At Bridgeport Hospital Angelo James underwent a series of tests, including a spinal tap.

Watching her infant being "poked and prodded" was difficult, Jenifer said.

Each time a blood test came back with a "negative" result, the likelihood of a more serious diagnosis increased.

The DNA test results that would affirm SMA wouldn't be available for three weeks.

During this time, the Maglioccos saw a doctor in New Jersey about obtaining a Bi PAP ("Bilevel Positive Air Pressure") machine that would help Angelo James breathe easier.

Before this machine arrived, however, the baby had his first of several cardiac arrest episodes.

While waiting for EMS technicians to arrive, Jenifer's mother gave Angelo James mouth-to-mouth resuscitation. He was admitted to the hospital and released that evening.

The next day, Angelo James again went into cardiac arrest and was taken, once again, by ambulance to Bridgeport Hospital.

Surrounded by close family members, Angelo and Jenifer said they made some important decisions about their son at this time.

Even with the eventual use of the bi PAP machine, the child's life would only be extended for another couple of months, they said.

"We wanted to do whatever we could now to make him comfortable," Jenifer said.

With the help of hospice, they brought Angelo James home and created their family's final memories with their son.

Angelo said his wish is to keep his son's name alive through the Angelo James Foundation.

Tickets for the fundraising dinner, including an open bar, are $100, and can be purchased at the door or by calling 203-913-3309.

Donations to the Angelo James Foundation can be sent to P.O. Box 189, Trumbull CT. Information also is available at www.angelojamesmaglioccofoundation.org.

Trumbull Times 2006

 

Fairfield middle students raise $7,500 to fight fatal infant disorder


ANDREW BROPHY abrophy@ctpost.com


FAIRFIELD Nearly four years ago, Christina De Andrade, a sixth-grade Spanish teacher at Fairfield Woods Middle School, lost her 3-month-old son, Fernando De Andrade Jr., to a rare genetic disease.
"My husband and I cherished every moment we had with our son because we knew it wouldn't last," De Andrade said Wednesday.
Today, Ethan Takacs, the 6-month-old grandson of Candi Takacs, the middle school's secretary, is fighting the same disease.
Ethan has a feeding tube and needs around-the-clock care, but is doing OK, Takacs said. "He's very smart. He's very responsive. He's just a good little guy," she said.
Fernando and Ethan were diagnosed with spinal muscular atrophy (SMA), a neuromuscular disease that affects one of every 6,000 babies to varying degrees.
SMA is not well known, but is the leading genetic cause of death for babies under 2 years old, De Andrade said. "It's out there," she said.
Fairfield Woods Middle School students on Wednesday donated more than $7,500 to Families of Spinal Muscular Atrophy (FSMA), an international organization that helps families whose babies have SMA and that funds research to find a cure.
"I can't believe they raised that much. I'm amazed by the generosity," said Mary Ellen Barrelle, treasurer of FSMA's Connecticut chapter.
FSMA is run by volunteers and 80 percent of every dollar goes to research for a treatment or cure, while 17 percent goes to family support. Three percent covers administrative costs, Barrelle said.
Molly Henry, a physical education teacher at Fairfield Woods Middle School who organized the fund-raising effort, said she thought students might raise $500 to fight SMA and was shocked at the final amount.
"It took on its own life and the kids, they took it over," Henry said. "It's a lot of money for middle-schoolers to raise for people they don't know very well."
"I basically cried every day. It's been so emotional because we're a tight-knit staff, and Fairfield's a tight-knit community," Henry said.
Jack Gavey, a sixth-grader, raised $1,300. "My mom wanted me to raise at least $1,000, and I did," he said.
Jack's parents, Peter and Carla Gavey, donated $500, and Randy Heck, a friend of the Gaveys, contributed $500, Jack said.
Henry said 126 Fairfield Woods students signed up to raise money and each student promised to raise at least $10.
Students raised money on their own, outside school, over the past month, and teachers and staff also contributed money, Henry said.
Henry said she organized the fund-raising effort because she's close to De Andrade and went to high school with Fairfield Police Detective Jason Takacs, Ethan's father.
"Nothing bad has ever happened to me, and that's our job as humans, to give back to people who need it when they need it," Henry said.
One in 40 people is believed to be a carrier of SMA. If two people who are carriers have children, there is a 25 percent chance the baby will be diagnosed with SMA, Barrelle said.
SMA has three types and Barrelle's nephew, Shaun Lesniak, a sixth-grader at Weston Middle School, was diagnosed with type 2 SMA, which affects the lower extremities, about 10 years ago.
De Andrade said Fernando and Ethan had been diagnosed with the first and most serious type.
De Andrade said it is imperative people learn about SMA. "As they get closer to finding a cure, it will be imperative that people know about that cure and the testing as soon as possible," she said. "If there's a cure, the sooner they can help these children, the better, and they're close."
To learn about SMA or to make a donation to FSMA, check
www.curesma.org

 

Community Rallies Around to Help Policeman's Son


By Kirk Lang
Article Launched: 05/04/2007 12:39:22 PM EDT


Fairfield Police Detective Jason Takacs and his wife, Kelly, have been blessed with a wonderful support system of friends and family who have been helping them out tremendously ever since the couple found out their first-born child, Ethan, suffers from spinal muscular atrophy Type 1.

Ethan will be turning 2 years old next month, and because of SMA, which is a motor neuron disease that affects all of the muscles in the body, he cannot walk, talk or even crawl. In addition, he cannot keep his body or head upright without special supports. SMA also affects Ethan's ability to swallow and breathe, and because of this, he has numerous machines he has to use throughout the day, including a G tube that allows caregivers to feed Ethan directly into his stomach.

Despite the complications of SMA, Ethan's intellectual activity has not been compromised. "If you ask, 'Where's Mommy?' his eyes move over to his mother," said Jill Greenwood, Ethan's aunt.

The only thing that will change Ethan's situation is if a cure is found for SMA. Equipment and care for Ethan is very expensive. While Jason earns a decent salary and has a good medical insurance plan as a member of the Police Department, he is the only breadwinner in the household. Kelly had to quit her job as a personal trainer not long after Ethan was diagnosed with SMA at 6 weeks old.

Paying the bills and paying for all that Ethan needs is a challenge for the Takacs.
Friends and family are looking to help where they can. A fundraiser called "Walk for Wheels" will be taking place this Sunday at Roger Ludlowe Middle School at 10 a.m. The goal of the fundraiser is to raise money for a handicapped-accessible van. Ethan can't sit properly in a traditional car seat, and his stroller, which allows him to lay flat and has special shelves for his machines, can't fold up and fit in the family's SUV. When Kelly and Jason want to take their son out to the Beardsley Zoo or some other locale, "we put the stroller in my dad's van, and he has to follow us," said Kelly.

Because Ethan can't sit upright in a car seat, his parents have to lay it across the seat, which leaves Ethan lying down with his legs up in the air. A handicapped-equipped van will help alleviate existing travel problems.

Businesses and members of the community have already made donations toward Sunday's fundraiser. There have been many gift certificate donations that will be used for the raffle at the end of "Walk for Wheels." People have also donated gift baskets, world-ranked tennis pro James Blake sent a signed shirt and J.J. Henry sent some items as well, according to Kelly. There will be a slideshow about Ethan, a balloon artist, arts and crafts tables, a deejay, a clown and Stew Leonard's mascots Wow the Cow and Stewie the Duck.

"It will be a good event for kids," said Jason. Tickets are $10 a person or $25 for a family of six. For more information, log onto www.our-sma-angels.com/ethan.

Raising Ethan has not been without its challenges. He gets physical therapy twice a week, occupational therapy once a week, speech therapy once a week and massage therapy once a week. He also gets some music therapy. Even though Kelly quit her job to take care of Ethan, she really needs at least four hands, according to her husband. There is a nurse who comes in for eight hours a day Monday through Friday as well as family members (from grandparents to aunts) who stop by, some every day.

Greenwood assists when she can but hasn't been over in a couple of weeks because she's been under the weather. "Ethan cannot be around anybody that has a weak immune system or infectious germs," she said. Kelly added she would never take her son to the mall.

Kelly said children born with Type 1 SMA typically are not expected to make it to their first birthday. Ethan, however, is beating the odds as he nears his second birthday.

"Part of the reason he has stayed healthy is because of how serious we treat things," she said. Ethan was able to attend the circus recently but only because the family watched from a skybox.

As Ethan cannot sit up and play with traditional toys, all of his toys are switch operated. Fortunately for the Takacs, they know a Fairfield family that can relate to their situation. Katy and Scott Therriault also have a young son, Billy, who has SMA. Ethan and Billy have a play date every Thursday. Kelly said it's great that Ethan has someone his age with whom he can interact on a regular basis. "He's so happy. They do art and music together," said Kelly.

Kelly said the initial diagnosis was the hardest part. "Ethan's the first grandchild on both sides of the family. My husband is very into sports. Ethan is a boy, so you plan all this stuff [for him]," said Kelly. "When I think back it was almost surreal. You go through this period where you're devastated."

"I couldn't wait to teach him to play sports," said Jason, who bought a house in Fairfield with a level lot with the expectation he and his son could practice various sports in the back yard. "I wanted to teach him to play catch or teach him to swim. Unless they come up with a cure, the odds are these types of sports he won't be able to do."

Greenwood said her sister and brother-in-law have remained upbeat despite the cards that life dealt them. "They never say, 'Why did this happen to us?' They just think, 'This is our child and we're going to do what we can to make him healthy,'" she said.

Several officers have donated "comp time" to Jason, which he can use to accompany his son to doctor's visits or to see his family without losing his own vacation time.

This has definitely been a life-altering change for the Takacs. They use to be concerned about the going to the gym. In fact, they first met at a gym. Now, however, they are most concerned with getting Ethan all that he needs to grow stronger and continue his mental development.

If the fundraiser takes in funds above and beyond the cost of a handicapped-accessible van, the extra funds will be put toward a power chair, which would allow Ethan to become mobile.

"Ethan made me an aunt," said Greenwood. "It was very disheartening when he was diagnosed, but he's a blessing, and he's our reason of hope and living each day." She added, "Ethan's energy and spirit is contagious. You want to be around it. You can learn a lot of life lessons from him, such as love, dedication and drive."

While some may say that Kelly and Jason have it rough, Jason points out there are others dealing with more stressful situations. "I know firsthand there are people in a lot worse shape than I am, who don't have the family base, who don't have the insurance and don't have the understanding of their employer like I do," said Jason. He added, "Being a cop in the same town I live in, it makes me more accessible in the event I'm needed at home."

 

ANDREW BROPHY abrophy@ctpost.com

FAIRFIELD Ethan Takacs, 22 months old, lay on a blanket of stars in his bedroom, watching a cartoon on a flat-screen TV.

His tiny arms and legs rested in slings hung from a wooden beam above his bed to give him a feeling of weightlessness. Ethan was motionless, but his

 

 

 

 

 

Kelly Takacs of Fairfield has rigged her son Ethan's bed with special slings that allow him to move his arms and legs. Takacs said she is compiling a portfolio of her son's drawings. Ethan, 22 months, suffers from Spinal Muscular Atrophy. (Brian A. Pounds/Connecticut Post)

head was turned toward the TV and his large brown eyes followed the animated action.

Ethan, diagnosed when he was 4 months old with Spinal Muscular Atrophy Type 1, hasn't had an easy life, but he's proven he's a survivor.

A doctor in October 2005 said he believed Ethan wouldn't reach his first birthday. But his parents, Kelly and Jason Takacs, have helped their first child approach his second birthday, when children with SMA Type 1 begin to have far greater chances of reaching adulthood.

"If you want to fight, look at what you can do," Kelly said.

Jason, a detective in the Fairfield Police Department, said that SMA, a genetic disease that weakens children's muscles and immune systems, is rare.

So the Takacses were lucky to get in touch with a specialist, Dr. John Bach in New Haven, to help their son's fight for life, the father said.

Kelly said she and Jason heard about Bach from another Fairfield family whose child was diagnosed with SMA.

"Dr. Bach has always stressed if we get him past the age of 2, the chances of him living a longer, fuller life are much better. The numbers are astronomical after that," Jason said. "They're older, so they're a little bit stronger and not as

susceptible to falling prey to the average colds."

Jason and Kelly also are drawing inspiration from a 19-year-old woman with SMA who also is a patient of Bach's.

Jason and Kelly Takacs of Fairfield are looking to raise money to help with son Ethan's fight against Spinal Muscular Atrophy. (Brian A. Pounds/Connecticut Post)

She is able to talk and use her fingers, which enables her to operate a wheelchair and computer, and she created a Web site for Ethan and T- shirts that bear his likeness.

"She's our main motivator, what she's been able to do, and we hope to mimic that with Ethan," Jason said.

SMA is a genetic disease that affects voluntary muscles used in crawling, walking, moving the head and neck and swallowing. The gene that produces protein critical to the survival and health of motor neurons, which activate those muscles, is missing or mutated in a person with SMA.

Kenneth Hobby, executive director of Families of Spinal Muscular Atrophy in Chicago, said one in 6,000 children is born with SMA in varying degrees of severity. Type 1, Ethan's type, is the most severe, Hobby said.

One in 40 people is a carrier of SMA, and if both parents are carriers, there is a 25 percent chance the disease will appear in their child, Hobby said.

Researchers have yet to find a cure or treatment for SMA, though work is ongoing, Hobby said.

Clinical trials are being done with drugs approved to fight other diseases to see if they can slow down or stop SMA, and research also is being done to develop drugs that can treat the disease directly, Hobby said.

"We are getting very close to a treatment & This is a lifetime treatment that somebody would be taking," Hobby said. "Cures are a little further out. If you're going to cure it, you have to bring back cells that have died, which is very tough to do."

Jason said Ethan's diagnosis in October 2005 came as a shock because neither he nor Kelly knew they were an SMA carrier and everything had gone well with Ethan's birth. News of Ethan's diagnosis was devastating, Jason said.

"The one encouraging thing about this condition is it doesn't affect the brain or the brain stem in any way. His mind is unaffected," Jason said.

Ethan loves to read, be read to and play with toys and his computer.

Kelly said she's also found software that will enable Ethan to read a page on a computer and then turn to the next page by pressing a switch.

Ethan also likes to draw on his computer, which he does by pressing a button to choose colors, Kelly said.

"I think things are going to be good for him because he's so smart," Kelly said.

Jason said he was surprised when Ethan was able to operate a demo power chair in their front hall.

"We put his hand on the control, just for kind of giggles at that point, and he moved himself and he knew he was doing it. The fact he was able to figure it out that quick was kind of neat to see," Jason said.

Kelly Takacs holds her son Ethan, 22 months, in her Fairfield home. Ethan suffers from Spinal Muscular Atrophy, a rare motor neuron disease. (Brian A. Pounds/Connecticut Post)

Kelly said she was amazed when Ethan vocalized an entire verse of "Twinkle, Twinkle Little Star" for his music therapist. "I almost fainted right there," she said.

Children with SMA tend to be smart because they can't get distracted, Jason said. "All he's really able to do is focus and take stuff in," he said.

While SMA doesn't affect Ethan's mind or ability to feel, it does affect even routine movements, such as swallowing, coughing, breathing and talking.

Ethan is fed through a tube in his stomach and communicates with his parents by looking at something he wants and then looking at them.

Children with SMA tend to breathe with their abdomens instead of their chests so Jason and Kelly put Ethan on a ventilator at night to give him a break.

One of the toughest parts of Ethan's daily regimen is loosening fluid in his body, Jason said.

Most people cough to loosen fluid, but Ethan can't cough, so Kelly or Jason tap Ethan's body and then use a suction machine to remove the fluid.

Jason believes that process must be especially tough for Ethan, so the parents distract him with a video of "Clifford the Big Red Dog," which is Ethan's favorite cartoon.

"You put Clifford the Big Red Dog on and he loves it. It turns something that normally would be traumatic into no big deal," Jason said.

Jason said his and Kelly's relatives help out a lot by stimulating Ethan's mind and taking care of him. Because Ethan can't move on his own, someone has to help him engage his mind. "Ethie helps because he's so easy to love," Kelly said.

Kelly, who is pregnant with twin boys, said she expects Ethan to enjoy having brothers because he loves when little children are around.

Kelly and Jason Takacs are sponsoring a "Walk for Wheels" fundraiser today to help cover Ethan's medical expenses and pay for a power wheelchair and a vehicle that can better accommodate the boy's medical equipment.

The fundraiser is from 10 a.m. to 1 p.m. in Roger Ludlowe Middle School's gymnasium at 689 Unquowa Road.

Kelly and Jason said they hope today's fundraiser also sheds light on SMA and allows parents of newly diagnosed children to know the disease can be fought.

"That's going to help the next Kelly and Jason Takacs who don't know, so we're hoping to get awareness out there," Jason said.

Today's fundraiser will include a walk, family-friendly music, games, entertainment, a raffle and a silent auction. Ethan's doctors and nurses will be on hand to talk about the boy's condition and day-to-day activities. Registration for the walk, payable at the door, is $10 per person or $25 per family.

For information about Ethan, visit his Web site, www.our-sma-angels.com/ethan.

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