Challenge Aspen adopts program
Challenge Aspen is getting a boost of more than $100,000 from a nonprofit organization dedicated to assisting deaf and blind children from around the world.Denver attorney Shari Willis was in Aspen on Friday to celebrate the decision to give control to Challenge Aspen of a nonprofit she helped found. Willis started Katlyn’s Hope with her ex-husband after the death of their infant daughter, Katlyn, in 1996. Last week would have marked Katlyn’s 11th birthday.Katlyn Willis was born, blind and with moderate hearing loss. As Katlyn’s parents learned the extent of their daughter’s disabilities – she could perceive light and responded well to hearing aids – they fought an uphill battle to help Katlyn grow as any other child would, searching for ways to help teach her what any other parent would teach their infant.Seven months after birth, however, Katlyn succumbed to a respiratory infection. She died Feb. 7, 1996.”We just saw how hard it was to work within the system,” Shari Willis said. “It’s not very user-friendly.”Willis remained undaunted, however, refusing to accept that her daughter couldn’t lead a normal, fulfilled life.”You would hear, ‘She won’t ever be able to do anything,'” she said. “[But] I’m her mom, and my job is to remain hopeful.”Willis was positive Friday as she recounted the difficult story of her daughter’s short but influential life.When Katlyn was 5 months old, she grew ill. It became clear she would not survive, and her parents began the difficult struggle of watching their child slip away.”We did what you do when you’re losing a child,” Willis said. “I don’t know that there’s a protocol.”During the last two months of her life, Willis’s daughter “was in no way the little girl we knew,” she said. “Her quality of life wasn’t what it had been previously.”On the day she died, Katlyn’s parents could see that she had decided to stop fighting.During Katlyn’s final moments, her parents made a promise to their daughter.”We’re going to keep doing this for other kids,” they told her. Shari and Jeff Willis watched as Katlyn opened her eyes one last time and appeared to look directly at each of them.”She saw us,” Shari said to her husband.”I know,” he replied.”I guess we’re committed now,” Shari said.And with that promise, Katlyn’s Hope was born.Over the next decade, the organization raised money to help provide in-home training for deaf and blind children, as well as educational toys, hearing aids and glasses. It also provided travel stipends to send families to conferences and workshops to help them learn how to cope with children with disabilities.But the Willises’ lives changed over that decade – they divorced, and Shari moved from their home in Wichita, Kan., to Denver – and they decided the board couldn’t give the necessary time to maximize the organization’s potential.Shari Willis began looking for an organization with a similar mission, and she came across Challenge Aspen, which works with a broader age range than Katlyn’s Hope, as well as with a broader range of disabilities. Willis liked the group’s mission.”It’s not about teaching somebody to ski,” she said. “It’s about teaching them they can do anything.”And the program engages the whole family, as well, one of Willis’s goals.Sarah Williams, managing program director for Challenge Aspen, said that “funds are always needed in nonprofits,” and the programs are a perfect match. Challenge Aspen is still working out exactly how to use the funds, but, Williams said, “there’s obviously a natural affinity for those funds to serve the deaf-blind community.”Challenge Aspen sponsors a ski festival for the visually impaired, as well as a number of other camps and special events for people with disabilities.Willis, who specializes in medical malpractice and personal injury cases, said she will continue to be involved with Challenge Aspen, although it’s not clear exactly what role she will play. Passing the reins to a new organization is a bittersweet goodbye, Willis said, but she’s happy to have a venue to do more for her clients than simply win their cases.”Our legal system is set up so what you get is monetary damages. It doesn’t make you whole again,” she said. “This kind of a program gives you your life back.”Abigail Eagye’s e-mail address is firstname.lastname@example.org
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