Love is something everyone has even if you deny it you still have it.

-From the introduction to 'Losing Lucy' by Ray Gaskill

Ray Gaskill is a soft spoken, sandy-haired teenager from River Forest who cares for multiple family pets, is a big fan of paintball and loves to run.

The 15-year-old is also a high-functioning kid who struggles with the full spectrum of autism, one of 75 foster children who have been placed with Mary and Rob Gaskill since 1992. Now the Gaskills have adopted Ray. He is the middle child in a large family - four biological, six adopted and two foster kids.

But top of mind for Ray these days has been keeping alive his bond with his terminally ill foster sister Lucy. The toddler has a rare and genetic neurological disorder called SCA7 (Spinocerebellar Ataxia 7) and isn't expected to survive the summer. Her condition occurs in fewer than one per 100,000, and some studies have shown that SCA7 represents only 2% of all SCA disorders.

Till now, Ray has been wrapping himself around his ailing foster sister's situation, wondering how he and everyone else could be so focused on her imminent death instead of celebrating what life she has left. Then his middle school teacher got the creative juices flowing when she assigned an end-of-the-year English paper in which he was to compose a story involving a "super power."

Ray penned "Losing Lucy," a touching memoir about his family's life with Lucy - he was required to fictionalize names and details - and how running to raise funds for kids like his baby sister was in fact his super power: If people did it, running to raise money for this cause could help fund research toward a cure for more obscure deadly diseases that afflict children and adults.

In early June, Mary Gaskill decided to turn the essence of her son's classroom assignment into a tangible community event. This weekend, Saturday, June 27 at 9 a.m., adults and children participating in the Laps4Lucy 5K walk/run will circle the outdoor track at OPRF High School. Registration begins at 8 a.m. More details are available via the family's blog, www.laps4lucy.wordpress.com.

"Many of my friends thought I was going too fast, but we wanted to do this run quickly because Lucy might not have long left to live, and it would be really great if she were there," Gaskill said.

Participation in the race is free, she adds, and pledges earned from individuals and local businesses will be forwarded to the National Ataxia Foundation, www.ataxia.org.

"I think Ray just writing a story for his class, being in a contained classroom, and going to OPRF and being in all special classes, is incredibly amazing," she observed. "Ray is really purposeful, emotional and very persistent. Usually with children with autism, you will find that they are very focused on something. That is part of their illness. Ray is focused on doing something for Lucy. Every time I read his story, I cry. It is our real life and very encouraging to all of us."

Celebrating life's uncertainty

In "Losing Lucy," Ray writes about how as Lucy's condition began to rapidly deteriorate, he no longer ran for fun but to escape his problems - and it helped.

When Lucy couldn't walk anymore, it worried him into spending every day after school with his terminally ill baby sister, which forged the bond.

"We would play hide and seek and when it was her time to find me, she said 'me' in a really low voice, which was really funny," he said.

Another fond memory is when he and another sister would take her out on the front porch to sit and play. Lucy would put her sister's finger in her mouth, and that sister would put her nail behind Lucy's teeth.

"Lucy thought that was so funny. She would laugh so hard that we would do that for at least an hour," he said.

Being a boy who runs for fun, Ray said he also likes running Lucy around the house in her wheel chair, which makes his mom mad.

"I always have known that everybody at some point is going to die," said Ray, "but she has such a short time, and in some respects, she had some of the same life that everyone else her age has had. We are trying to make every second count."

Lucy's illness was slow to start. Her biological mom, who also suffers from it, is still alive. Late last year, Lucy's symptoms escalated. The 50-pound, brown haired, African-American toddler who had been walking and running last summer is now wheelchair-bound, going blind, unable to swallow on her own and because of it often begins choking. To eat, she underwent surgery to insert a feeding tube directly into her stomach, and in March she spent 22 consecutive days in the hospital, Mary Gaskill said.

Prior to Lucy's placement with the Gaskills, doctors told the couple their terminally ill foster child wouldn't live six months. Even so, because of their ongoing experiences taking in foster children with special needs - an abused child who had 22 broken bones, one who was blind because of shaken baby syndrome and many foster kids with emotional issues - they welcomed Lucy in and braced themselves for whatever lay ahead.

"Many times in a household where there is an impending death, nobody talks about it," Mary said. "Then Ray brought home his story, and at first we all go into our own corners and read it with tears in our eyes, and now because of it, he has allowed us to talk about what is happening here."

Committed foster caregivers

Before Rob and Mary's nuptials, they mutually agreed on the idea of opening their family home to children from the foster care system, as well as adopting some of them, said Mary, who is currently launching an adoption and foster care support system called Tapestry Oak Park. Rob, the former publisher of the Oak Leaves/West group, now does strategic marketing for non-profits.

For Mary, creating continuing relationships with at-risk foster kids and their biological families is her calling.

"I have always, always loved children, and for me, it's the innocence of them and the need for close adult mentoring and modeling and advocating and love in this busy crazy world," she said. "We know there are a lot of great foster families out there, but we also know there are a lot of things that are real messy in the world, so we do whatever we can, in big and small ways."

When Lucy leaves them, Mary says they are looking forward to being foster parents again, as well as being a support system for parents and children with whom they have continued to connect.

"[By going public] I really hope our family can help other families who are going through any terminal illness in a home because people don't know what to do with it. They don't know what to say, and you tend to be left alone when you are going through it," she says.

In preparation for the Laps4Lucy race day, the entire Gaskill clan, including 21-year-old Maura who designed the family's blog (laps4lucy.blogspot.com), has been assigned pre- or day-of-race tasks. But it's Ray and his mom who are really the event organizers.

Ray confesses he never expected his story to come this far, but in the future, he hopes to expand and publish Losing Lucy as a book someday.

"Sometimes the smallest things come and jump at you from nowhere," Ray said. "I think this race could be something we create with our family, but then multiple families can participate, and we all will become a larger family, which will accomplish my mom's goal." n

Losing Lucy

Editor's note: Because of privacy considerations, we're using the name Lucy for Ray's foster sister.
Editor's note: Ray changed the names and fictionalized his story as part of a classroom assignment. Ray Gaskill is a student with autism.

Ready … set … go

What: Laps4Lucy 5K Fundraising Run and Walk

When: 9 a.m., Saturday, June 27; registration is at trackside at 8 a.m.

Where: South side of Lake Street, between Scoville and East avenues, on the Oak Park and River Forest High School outdoor track

Donations: Make all checks payable to the National Ataxia Foundation

For more information: www.laps4lucy.wordpress.com or laps4lucy.blogspot.com or call 708-205-3546.

Copyright 2009, Wednesday Journal Inc.