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Costs of illness go far beyond medical bills

Shirley couple help families of pediatric epilepsy patients

Shirley Oracle
November 26, 2010
By Dina Samfield, Correspondent

SHIRLEY -- Heather and Erik Plotkin understand what it is like to have a seriously ill child who needs intensive medical care in a hospital setting.

Their son, Tyler, now a kindergartner, was born with epilepsy and after having had 20 grand-mal seizures a day, he underwent brain surgery at 15 months old.

"As of Oct. 19, it has been five years since Tyler's first surgery. He's had 24 surgeries to date," said Heather recently in the kitchen of her Shirley home.

The couple has had to spend days and weeks at a time in the hospital for various tests, emergency-room visits and surgeries. They have also spent up to a month at a time with Tyler in rehabilitation. From their own experiences, the Plotkins learned firsthand that the costs for families visiting medical facilities are much higher than just medical bills.

"We were very fortunate to have been able to afford the parking fees, the meal expenses and the cost of living while in the hospital, but we soon found out that was just the beginning of those expenses," Heather said.

As Tyler progressed in his therapy, he required several pieces of medical equipment -- a stander, a gait trainer, a special chair, several pairs of foot braces and many other smaller pieces of therapy equipment. The couple said that they are fortunate that they have insurance to cover the costs. The stander alone would have cost nearly $5,000 without insurance. They also feel fortunate to have many friends and family members around them to help.

But they soon realized, as they met other families going through the same things they were, that not everyone is so lucky. That is when they got the idea to raise $100,000 for Children's Hospital Boston to provide financial support to families of children with epilepsy that are being treated there.

The couple established The Tyler Foundation in 2006, in honor of their son, to provide meals for the families of children who are inpatients at Children's Hospital Boston and UMass Medical Center, and gas cards to be used by families who are transporting children to doctors' appointments and hospital visits related to epilepsy.

The foundation also provides financial assistance for the purchase of therapeutic equipment used in the treatment of children suffering from the delayed development caused by brain malformation and seizures.

Why UMass Memorial Children's Medical Center
Epilepsy is a complex brain disorder in which abnormally excited or "uninhibited" signals to the brain cause recurrent seizures. In some people the seizures can be controlled and in others not. The seizures can be violent, or mild. Some people are born with epilepsy; others acquire it due to traumatic brain injury, stroke or other means.

According to the Epilepsy Foundation, there are approximately 326,000 U.S. school children through age 15 living with the disorder.

In seeking treatment for Tyler, the Plotkins ended up at Children's Hospital Boston, so that is where they first concentrated their fundraising efforts. However, they soon realized that families in Central Massachusetts also needed their help.

"We came from and grew up in Central Massachusetts, so I didn't want to leave Central Massachusetts behind," said Erik. "Not everyone has the luxury or medical need to go to Boston. If (Tyler) were stable on meds, we may have stayed there."

"The UMass connection will help more families from this area because many families start out there," Heather added. "I met with the entire team down there and one thing the business office said was that 'people don't call us like this.' They were ecstatic to get a call that we wanted to start a fund. I was astounded because I thought that there would have already been a fund like that, but it seems that (all funding) goes to Boston."

The couple has set a goal of writing a check for $25,000 for the UMass Memorial Children's Medical Center by the end of the year.

The first big fundraiser for the Tyler Foundation Fund for Extraordinary Needs at UMass Memorial Children's Medical Center was the Nov. 6 fundraising dinner and silent auction at the Devens Common Center. All of the proceeds from the event are being used to help provide financial support to families' of children with epilepsy.

"We're helping local. We have to have $25,000 to start the fund. Children's hospital will use that endowment's interest. So it'll live on in perpetuity," said Heather.

"The fund is only for pediatric epilepsy," she explained. "There's a social worker, a few doctors, a neurologist and the nurses, so their staff will have access to the fund and can use it for things like parking, prescription drugs, medical co-pays, taxi fare -- things that insurance doesn't pay for -- like car seats, bath seats, and shower seats.

"We had to appeal (the denial of health insurance coverage) to get a special tub seat for Tyler and for the car seat. These are things the hospital can use that money for. First, they will fight to get insurance to pay for it, and if they can't get it covered, then this fund will pay for those needs," said the couple, often helping to finish each other's sentences.

Looking for a Match
"We started off helping Children's Hospital because that is where we go, and then I met with UMass and was floored by the need that's there," Heather said.

"One of the trustees (in Boston) set up a fund that matched what we raised. Our initial match was $25,000 to $50,000.

"Right now we are looking for someone -- a family, company, or another foundation -- in this area to match this (UMass Memorial) fund. It would be so nice to start them off with $50,000 right out of the gate.

Chief of Pediatric Neurology at UMass Memorial Children's Hospital Dr. Paul Marshall brought some of his patients to the Nov. 6 fundraising dinner so that they could tell how they could have been helped had they had access to The Tyler Foundation fund.

"Dr. Marshall was telling me that children are having to skip their meds because they can't afford the copays. The nurses are taking money out of their pockets to pay for these seizure meds because they feel so bad. If you skip just one or two days, the levels can dip and your seizures can be worse. Or, their appointments are being missed because they can't afford the parking. Or even if it's just a wellness visit, they are skipping it to save the money.

"But as the kids put on weight, if they are on 10 mg of a med, it isn't the same as they gain weight. They are having a hard time getting families to go to their wellness appointments."

"Or the family can't afford to miss a day's work or a few hours, so they skip the appointment because everything is going well, not knowing that there may be changes that need to be made at the appointment," added Erik.

"Sixty dollars could be made by staying at work -- that could be an electric bill."

"The Children's Hospital (Boston) Tyler fund has $75,000, but our goal is to have them both at $100,000," Heather said.

Tyler Foundation Fundraisers
To keep money flowing into the two funds, the foundation has one big annual fundraiser, and several smaller ones throughout the year, such as the one held at Friendly's Restaurant in Leominster, where part of the proceeds from meals goes directly to the foundation. The foundation also sends out an annual spring newsletter to let people know how their money has helped and to solicit more funds.

Other organizations also hold fundraisers for The Tyler Foundation. "The Berlin (Memorial) School did a walkathon we were the beneficiary for," Heather said. "The fourth- through sixth-graders raised $5,400. Every year they pick a different charity."

She said that she went into the school and told the students about Tyler's right hemispherectomy. "They said, 'Oh, so he has just half a brain.' I brought in a pair of his braces and told them they cost $3,500, and they were so excited. They designed a special bright green T-shirt (for their fundraiser) through a contest." The foundation, said the couple, uses Tyler's name, but they said that they do not receive a penny of the funds.

"We don't take any of the money, we don't get a salary," said Erik. "It's 100 percent toward helping families in those hospitals." He said that at one time the Children's Hospital ran out of size six diapers. Thanks to the Tyler Foundation, there are now two large cabinets filled with necessities like those for pediatric epilepsy patients.

Not all funds provided by The Tyler Foundation are essentials, however. "This family from Tennessee made and sold their own cookbook and financially didn't need our help, but emotionally they did and we gave them a little care package," Erik explained.

How It Works, Why the Need
"Families are finding us through the foundation website, an article, or something they heard about or through the social workers. We get direct contact with them," said Erik.

"We work through the doctors, nurses and social workers first to make sure that they really have a need and that there isn't another funding source that can help them.

"A perfect example of what they may need is food. UMass doesn't have the luxury of handing out free parking or free food, because they are a smaller hospital."

"We provide things like a special needs tricycle, co-pays, and an electric bill for a family in New Hampshire. We have had 90 care packages go to families, and we have two care bins at children's hospital filled with shampoo, toothpaste, etc. in case the families don't have a chance to pack them. We have two huge ninedrawer bins there," said Heather.

"And we have a request right now: We are working with someone to get (a family) help for a $5,800 walking brace that insurance won't pay for, and they had to put on a credit card to buy it outright.

"It's the technical advancements that the insurance companies aren't paying for. (This family) has at least two insurances, and they both have good jobs, but (insurance) won't pay for it.

"We've noticed that if you are wealthy enough, you're fine, and if you're poor enough, you get help. But if you are middle class, you can pay your bills, but if you have to stay in the hospital for two weeks you have to pay for parking and dinners, etc. If you're middle class, once you start piling those extra bills on it really starts to hurt. That's what we ran into. We were in the hospital for two months with Tyler.

"Only if you are way below the poverty level can you get help. There aren't things in place for the average middle class family once there comes a time of need," Heather explained.

According to a recent study by the Kaiser Commission on Medicaid and the Uninsured, health-care costs are a leading contributor to financial hardship for middle-class families. In 2003, nearly one in four middleincome Americans spent more than 10 percent of their family's disposable income on health costs, and among those with private health insurance, one in six still reported difficulty paying medical bills. A quarter or more of those with insurance and medical debt reported not filling prescriptions or skipping medical treatments because of the cost, according to the study.

"(Tyler) had 10 or 12 surgeries last year. We were just in the hospital for over two weeks and it reminded us what it is like. (Tyler's younger sister) Alisa wasn't allowed in the hospital because of H1N1, and prior to that she had gone to the hospital for every surgery. And she couldn't go, so that was a revolving door for us and I had to have her go to others. So she was with someone else every day and that was rough. Even to this day it has affected her."

Fortunately, Tyler is progressing well, and luckily for those in the Central Massachusetts and Boston areas, the Plotkins have turned their personal experiences into a means for offering help and hope to others in need. The Nov. 6 dinner and auction at Devens raised approximately $20,000 toward the Plotkins' $100,000 Tyler Foundation Fund for Extraordinary Needs at UMass Memorial Children's Medical Center.

If you would like to donate or obtain information about The Tyler Foundation, visit