Marblehead's Gilligan family

photo courtesy of The Daily Item of Lynn / Reba Saldanha

 By Henry J. Collins / The Daily Item

Story originally appeared in the Daily Item on April 9,2008
reproduced with permission

link to original story 

MARBLEHEAD - When you walk in the Gilligan residence on Jefferson Street it looks like any other normal family setting.

Jackson, 10, is sitting at the island in the kitchen wearing sunglasses emptying out his folder from school; Allison, 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, Alexandra, 16, like most other teenagers is not around for suppertime.

For parents Patrick and Amy Gilligan, reality could not be further from normal.

Jackson suffers from autism, Karlyn has cystic fibrosis and Allison, 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 Allison at 18 months when she went into renal failure.

Patrick 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," Patrick Gilligan quipped.

The way the house is set up, Karlyn and Allison share one bedroom, Alexandra and Jackson 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 Patrick 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," Patrick 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."

Patrick 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 Patrick explained how difficult it is for Allison and Karlyn to share the same bedroom.

"Karlyn is like a Petri dish that walks," Patrick said. "She absorbs everything and Allison 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," Patrick 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 Patrick 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," Patrick 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 Jackson 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."

Patrick 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 Patrick 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 Paul 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.

"Allison wanted pink and Karlyn wanted blue so that is why their room looks like a neon Easter egg," Patrick 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 Patrick 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."