Costs of illness go far beyond medical bills
Shirley couple help families of pediatric epilepsy patients
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
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
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
"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
"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,"
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
"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