Sunday, September 28, 2014

State of the Heart Hospice Patient Gets Final Wish Fulfilled

A sunrise and a sunset on the ocean with his fiancĂ©: That is all that State of the Heart Hospice patient Larry Kelly wants in the time he has remaining. The 49-year-old Indiana resident has ALS, known as Lou Gehrig’s disease, and realizes his life remaining is limited. His dream has been to take his fiancĂ©, Linda Allen, to a beach where they can enjoy the sun setting on the ocean and rising in the morning.

“If I can be with her to see the sun setting and coming up on the water, that is all I want,” Kelly said recently from his home in Portland. Allen has never been to the ocean. Kelly was diagnosed with ALS two years ago. Life expectancy with the fatal disease is three to five years; his condition has worsened in recent months.

Thanks to the combined efforts of State of the Heart and the agency’s wish granting program called Corynna’s Wish, and the Dream Foundation in Santa Barbara, California, Larry and Linda will be going to Clearwater, Florida the first weekend in October where they will stay at the Hilton hotel.
“It will be great to put my feet in the sand and realized that this dream has come true,” Kelly said. “That is all I want. I have been around the water a lot, but I want Linda to experience it with me.” The two have been together for the past 13 years.

The quest to fulfill the dream began with State of the Heart Hospice Social Worker Jennifer
VanSkyock. “Typically in our role as a social worker, we ask a patient if they have anything they want to see or do in life in the time they have remaining,” she explained. “Larry expressed a wish to go back to the ocean and take Linda with him to see the beauty of the sunset and sunrise on the water.” The hotel is on the water and features a large expanse of a white sandy beach. “It is great for this to happen,” Van Skyock said. “It will be wonderful for them to enjoy being together on the beach.”

VanSkyock contacted the Dream Foundation which is the first and largest national wish granting organization for adults and enhances the quality of life for individuals and their families battling life-threatening illness. Recipients are those individuals who have been given a year or less life expectancy. Founded in 1994, Dream Foundation serves more than 2,500 dreams each year. This year, the foundation will mark serving 20,000 individuals since beginning 20 years ago.
The Dream Foundation has arranged and paid for the flight to Florida and the stay at the hotel, explained Megan Turley, Dream Coordinator. While that helped with a major cost, Kelly and Allen were not sure how they could afford transportation and the costs of eating and getting about while in Florida. Kelly has been unable to work for some time and consequently the couple has limited income and could never have afforded the trip, they said. They applied for funding assistance with Corynna’s Wish.

Corynna’s Wish was established by State of the Heart and is named in honor and in memory of Corynna Strawser, a 16-year-old Greenville resident who was a State of the Heart Hospice patient. She died in December of last year. Her battle with Mitochondrial Disease drew national attention as she spoke openly about her struggle in an effort to educate the public about the fatal disease. She also had a strong belief and commitment to “paying it forward.” Corynna’s Wish was established to help State of the Heart Hospice patients financially fulfill their final wishes. The program will provide funds for food and incidentals while the couple is in Florida. This is the first “wish” fulfilled since Corynna’s Wish was established earlier this year.

Ryan Gathard, Fund Development Director for State of the Heart, said, “This is a perfect example of why we established Corynna’s Wish. We are helping one of our patients fulfill a wish that they could not have accomplished without some financial help. We are pleased to be a part of this dream for Larry and Linda.”

“The help from State of the Heart is a great addition to fulfilling the wish,” Turley said. “It will be very helpful for them and will relieve them of any worries about additional costs.” State of the Heart officials have also arranged to have wheelchair access for Kelly throughout the journey at the various airports, and have linked with Suncoast Hospice in Clearwater to assure that Kelly receives any hospice care that is required while in Florida. The couple leaves October 1 and return October 4.
The trip coincides with a fund raising event for Corynna’s Wish on Saturday, October 4. The event is the “Shine on Corynna Glow Ball Tournament” at the Stillwater Valley Golf Course near Versailles. Funds from the event will go to fund wishes of other hospice patients, Gathard said. The event is open to the public with registration at 7 p.m. and Tee off is at 8 p.m.

Kelly has been a hospice patient for the past four months. “The care has been awesome. We have had great care, more hugs and good times, and some giggles from the hospice folks,” Kelly said. He said he was somewhat taken aback at the quick response and service from State of the Heart. “Once I became a patient, before I knew it we had all that we needed.”

Allen admits to being a little apprehensive about the trip as she has never flown, and has traveled very little. “Larry wanted me there to see the ocean while he was still able to do it,” she said. She is looking forward to being with Kelly and being there as he fulfills his last wish. His hospice nurse, Nicole Johnson said “this is his one last big request. He never thought he would have the chance to do it. It is a dream come true for both of them.”

For more information about the services provided by State of the Heart Hospice visit the agency web site at To register to participate in the “Shine on Corynna Glow Ball Tournament, contact Gathard at 937-548-2999 or email him at

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