Making dreams a reality for children with cancer

Cancer connects Juneau woman, San Diego boy

Posted: Monday, May 15, 2000

A love of Tasmanian devils is one of the links between Marilyn Camm of Juneau and Alex Villegas of San Diego. Another link is cancer.

They met in April 1998 when both were sitting in a waiting room, waiting for radiation treatment.

``Alex was the only child I ever saw there,'' said Camm, a local attorney. ``He was post-surgery (for brain cancer) and had undergone chemotherapy, so radiation was the last phase of his treatment.''

Camm chatted with Alex, then 8, and discovered a common love of the cartoon character Taz.

``I'd have one of the 20 million Taz products with me, and I would leave it for him,'' Camm said. ``And his mother, a wonderful cook, invited me for dinner.''

Camm continued to fly to San Diego every six months for checkups following her surgery there for breast cancer. She phoned Alex each time, and eventually invited him to Alaska.

Cruise line, foundation join forces to grant sick kids' wishes

By JOAN PARDES

THE JUNEAU EMPIRE

Given the choice of going anywhere or meeting anyone in the world, Dylan Dean, an 8-year-old from Idaho battling bone cancer, wanted to see Alaska from a big boat and go salmon fishing.

His fishing expedition didn't produce any salmon but his Alaska adventure, provided by the Make-A-Wish Foundation and Celebrity Cruises, is more than he expected.

``It is so cool riding in the big old boat and going to different places,'' Dylan said after returning from his fishing trip Sunday. ``It is so much fun.''

Dylan, his little brother and his parents are among thousands of families living with life-threatening diseases who have been the recipients of the Make-A-Wish Foundation.

With a new office in Anchorage and 21 recently trained volunteers in Southeast Alaska, the foundation is making a larger commitment to communities scattered throughout the state.

``We currently have 18 kids from Alaska in the process of having their wishes granted,'' said Joanne Wiita, regional manager for the foundation in Anchorage. ``We're committed to granting wishes for every eligible kid in Alaska.

``It's really a magical experience working with these kids. People think it can be tough work but it is so joyful. It's infectious. We're all about communities helping each other. Both as volunteers and the in-kind support the foundation receives,'' Wiita said.

Wiita, along with other Make-A-Wish Foundation executives, spent time in Juneau over the weekend to facilitate Dylan's wish. They also held a press conference to honor their new official sponsors, Royal Caribbean Cruise Lines, Celebrity Cruises' parent company.

``Most of our donations are from individuals and in-kind support. This relationship with Royal Caribbean will result in a huge amount of dollars,'' said foundation president and CEO Paula Van Ness, who also mentioned Alaska Airlines' support to the program.

``Many people from the Lower 48 want to come to Alaska but most people from Alaska want to go to the Lower 48,'' she added.

Last year, Make-A-Wish granted 8,000 wishes in the United States and an additional 1,500 worldwide. Using 87 cents of every dollar received to grant wishes, the 20-year-old foundation makes all the arrangements and covers expenses associated with a child's wish from airfare to spending money, said Van Ness.

``We completely take care of everything and then step back and let the family enjoy the magic and the memories,'' she said.

``People still have the misconception that Make-A-Wish is for kids who are at the end of the line, but the foundation is designed for children with life-threatening diseases,'' she added. Some have a good chance of recovery.

To learn more about the Make-A-Wish Foundation, make a donation or offer in-kind support, visit the foundation's Web site through Hot Links at juneauempire.com.

Alaska Airlines employees chipped in to fly Alex and his mother, artist Brenda Villegas, to Juneau on Thursday. They will stay with Camm through Tuesday.

``He's a really neat kid,'' said Ray Vidic, an Alaska Airlines customer service agent who entertained the Villegases here, and helped expedite Alex's ticket.

Vidic said he worked with Lynne Wunsch, who works for the National Bank of Alaska and volunteers with the American Cancer Society, which collects airline upgrade coupons to help patients with costs.

``For every 12 upgrades, we can get a ticket for 75 percent off, which makes travel more affordable for people who need medical treatment,'' he said.

Alex suffers from dysgerminoma. Scans reveal three separate tumors. The tumors disappeared following his 1998 treatment, but have reappeared, Vidic said.

Alex has been learning to play the piano, one of his current tunes being the Flintstones theme song.

``We had to find things for him to do when he lost his vision two and a half years ago,'' said Brenda Villegas.

Alex nudges his mother and reminds her that now he's learning ``La Bamba,'' they need to hold a fiesta.

Whenever he feels well enough, Alex attends Bay Park Elementary where he's learning to type on a computer keyboard. He has plans for his typing skills.

``I am going to be a writer, and not only a writer but I am going to draw the pictures,'' Alex declared. Last Thanksgiving, he wrote and illustrated a story about Mr. and Mrs. Turkey, vegetarians who live in the town of Turkey Turkey.

Four years ago, Alex was diagnosed by a pediatric endocrinologist as having diabetes incipitus and a low level of growth hormone. When he suddenly lost his vision in December of 1997, his mother rushed him to the emergency room, and his true illness came to light.

Lately Alex is following a strict organic diet designed by a doctor and has shown some improvement in his vision.

Marilyn Camm plays the role of Alex's fairy godmother. For holidays, she sends him Taz things, including a cookie jar he displays on his piano. For Easter vacation, she sent money for trips to Disneyland and Sea World. She also sent him a Taz video game, because, for the first time, he could see well enough to use it.

``I like Taz because he spins, of course, and he jumps,'' Alex said. ``And when he eats he doesn't open the packages of food; he just eats the whole thing.''

During his visit to Juneau, Alex has been ``up close and personal'' with Liberty, a female bald eagle at the raptor center. And he's headed for a trip on a 40-foot-yacht with Don Kubley of Club Pacific Charters, plus some flightseeing, courtesy of Coastal Helicopters. He's dined for free at the Hangar and the Twisted Fish, which he awarded four stars for ``the best fries.''

Visits to an alternative medicine specialist and organic nutritional supplements for Alex total about $1,000 a month. Donations may be made to any branch of National Bank of Alaska in Alex's name, Vidic said.



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