Extreme home dreams not shattered for Marblehead's Gilligan family

[Guest guest]

Extreme home dreams not shattered for Marblehead's Gilligan family

The Daily Item of Lynn - Boston,MA*

By Henry J. / The Daily Item

http://www.thedailyitemoflynn.com/articles/2008/04/09/news/news01.txt

MARBLEHEAD - When you walk in the Gilligan residence on Jefferson

Street it looks like any other normal family setting.

, 10, is sitting at the island in the kitchen wearing

sunglasses emptying out his folder from school; , 6, is

sitting at the same island eating a bowl of pasta for dinner; and

Karlyn, 7, is in her room reading a book out loud; the oldest child,

andra, 16, like most other teenagers is not around for

suppertime.

For parents and Amy Gilligan, reality could not be further

from normal.

suffers from autism, Karlyn has cystic fibrosis and ,

who had lost the function of both kidneys, was on dialysis for a

year before receiving a kidney transplant from her father - who says

she will more than likely need another transplant when she is 25-35

years old. The Gilligans almost lost at 18 months when she

went into renal failure.

Gilligan, who is a business development manager for

VeCommerce, said a doctor at Massachusetts General Hospital said the

odds of one family having three children afflicted with three

separate genetic disorders was the equivalent of hitting Powerball

twice. The odds of winning Powerball once are 1 in 146 million.

" I should be so lucky to just hit Powerball once, " Gilligan

quipped. The way the house is set up, Karlyn and share one

bedroom, andra and another and the parents' master

bedroom is in the basement next to the washer and dryer, and there

is not a complaint from anyone.

Part of the back of the house has been removed because of mold

growth and the family battles mold in the walls of the house which

makes the risk for the children exponentially larger.

Imagine how excited and Amy Gilligan were last summer when

they learned they were one of five finalists in Massachusetts to

appear on ABC's " Extreme Makeover: Home Edition " show.

" We wanted this so bad for the children, " said. " This was

not about us receiving charity or getting a new, big house, it was

about getting the kids something. It was about making things better

for the kids and extending Karlyn's life. "

said his company, as well as the Bell School, where Amy

works, have both been very understanding to their unique situation

and have both been wonderful since Amy is normally at Mass General

about once a week with one of the three children.

On a tour of the house explained how difficult it is for

and Karlyn to share the same bedroom.

" Karlyn is like a Petri dish that walks, " said. " She absorbs

everything and does not have the ability to fight off

anything. When either of them is sick they have to be separated and

one of them will end up taking over our bedroom downstairs. "

According to the Cystic Fibrosis Foundation, cystic fibrosis is an

inherited chronic disease that affects the lungs and digestive

system of about 30,000 children and adults in the United States. A

defective gene and its protein product cause the body to produce

unusually thick, sticky mucus that clogs the lungs and leads to life-

threatening lung infections and obstructs the pancreas and stops

natural enzymes from helping the body break down and absorb food.

" What we were most excited about was the kids would get exactly what

they needed, " said. " What Extreme Home Makeover would have

been able to do was to bring in experts on autism, cystic fibrosis

and kidney disease to create perfect spaces for the kids. It also

would have created more space so all of the kids would have had

their own bedrooms. "

In addition to helping a family, Gilligan said he wanted to do the

show to gain attention for autism, cystic fibrosis and kidney

disease.

Everything appeared to be heading in the right direction for the

Gilligans last summer.

Representatives from the show had met with the family on a couple of

occasions and they had met with the children to have them design

their perfect bedrooms and their perfect backyard.

That all changed in February when the family was notified they were

not chosen for the show - a family in Maynard was selected - a

family that both and Amy Gilligan are quick to say was a

very deserving family.

" When we found out we were not selected I think we all went through

a lot of emotions, " said. " The toughest part was sitting

down the four children to explain to them what had happened. When we

talked to the children the three girls cried and seemed to

understand it pretty well. We had told them all along it was kind of

a game we were playing and there was a chance we would not win. "

admitted he was not convinced his family would be chosen but

said over time he starting believing what Amy had been saying all

along.

" I just kept telling that something good was finally going

to happen for us, " Amy said. " It was finally going to be our turn. "

While the Gilligans are not quite sure what went wrong, they have

begun questioning whether they, and the town, did enough self

promotion.

" When we met with executives from the show we were told we could not

go to the media with the fact we were a finalist or we would have

disqualified ourselves, " Amy said. " As things went along we learned

the town would not waive any building permit fees for us. Thanks to

the work of (family friends) Kat Knight and Silva we notified

ABC that pledges were made to cover any building permit fees for the

show. They responded by saying, 'finally the town is rallying for

you.' It was at that point I realized that while we were told not to

promote ourselves we actually would have helped our cause had we

promoted ourselves. "

Amy said the family in Maynard had developed a Web site about

themselves and visitors were able to leave messages of encouragement

and offers to volunteer which she believes helped them in the eyes

of ABC.

Instead of throwing up their hands and feeling sorry for themselves

the Gilligans told the kids they would redo their rooms, which is

not an easy task when you have two in each room.

" wanted pink and Karlyn wanted blue so that is why their

room looks like a neon Easter egg, " said.

Knight and Silva are heading up the Gilligan Family Alliance to keep

pressing forward so improvements to the home will be made for the

children.

" All the pledges that were made to cover building permit fees are

still in place should Extreme Home Makeover decide to return to the

Gilligan home at a later date, " Knight said. " We also have a local

contractor and architect willing to donate time and services to do

whatever needs to be done for the family. We are all confident that

there are enough people involved and enough people with different

skills willing to donate their expertise to fix the issues in their

home and improve living conditions for the entire family. "

While and Amy Gilligan have been delivered another blow

neither says giving up or moving is an option for their family.

" While ABC could have done something we never could do, this is our

home, " Amy said. " We are both from Marblehead and my mother lives

about a mile and a half from here. Marblehead is our home and no

matter what, it is absolutely possible to do this ourselves. "