For families of children with severe disabilities in Southeast Alaska, services may be limited. That will soon change because of Dori Hildre-Chelini and her son Jeffry.
Hildre-Chelini's son Jeffry was born premature and experiencing several medical issues. He had to be taken from his home in Juneau to Seattle for medical treatment, and again fell ill upon his return home.
Courtesy photo Hope Community Resources Inc. has partnered with local businesses and families to build a home that is designed specifically for medically fragile individuals who experience disabilities. This home will enable families of Southeast Alaska to remain together or be reunited. For more information of how you can participate in Jeffry's Hope or to make a contribution to the Jeffry's Hope Auction, call 907-564-7462 or visit Hope's Web site at www.hopealaska.org.
After years of trying to provide for Jeffry at home, the family had to make the difficult decision to put him in a nursing home.
Because of funding regulations, Jeffry needed a new home but this time had to leave Juneau for a place that could care for him. Hildre-Chelini said that while she was happy to find Hope Community Resources in Anchorage, it was difficult for Jeffry to be away from Juneau.
Family friend Celina Tandy said Hildre-Chelini's family moved to California after her husband was transferred with his job shortly after Jeffry moved to Anchorage. Hildre-Chelini would fly back and forth to be with her son, many times using donated mileage for her and her family.
"Jeffry was physically big. He was not a small child to handle, and it would amaze me to watch Dori move him in a position. The adrenaline of what a mother has to do, to watch that was just amazing," Tandy said.
"They made every effort to accommodate his needs but it was not enough. As he grew older, they just had to do something and that's when they explored what there was in Alaska. Hope Cottages was best for them but it took Jeffry away," she said.
"He was a loving, loving child. It was interesting to watch how he would respond to his mom. He had no control of his hands, had to be fed, couldn't speak but there was a gravity between them the minute she would step inside the home. She'd touch him and this smile would form and he'd get jittery and excited."
During years of visiting Jeffry in Anchorage, Hildre-Chelini told her son she would find a way to bring him back to Juneau. She began planning a home in Juneau where Jeffry and other disabled children could safely live and be near their families. Jeffry died Jan. 17, 2001, but Hildre-Chelini's dream lived.
Jeffry's Hope is a community project to build a home in Juneau for people who experience a development disability. Hildre-Chelini continues to see the project through as Hope Community Resources, a non-profit organization offering residential and vocational supports to people of all ages experiencing development disability, completes the home.
"This type of Hope cottage is for the older child. It's when they get to be in their preteens when they are larger to handle physically," Tandy said.
Hildre-Chelini said the house on Steelhead is near completion and features four bedrooms for individuals, a live-in apartment for staff and an apartment upstairs for parents to visit. The floor plan is open to accommodate wheelchairs and lower windows so that children who can't sit up can still see outside.
"I made a promise to a little boy and said 'I'd bring him home.' When I couldn't, I really felt that it's such a shame a family had to be separated and leave their community because I didn't want to leave."
"I thought Juneau needed something like this. I just really didn't want to let this happen anymore," Hildre-Chelini said.
"Most of the children Jeffry's age who are disabled have since moved away; I didn't want that to happen again," she said.
"These kids have a wonderful life ahead of them no matter their ability. Jeffry was a great kid, and I just think these people have so much to offer a community and this will help them participate."
The home was built with the donations of several businesses who gave time, services and materials for the house. Businesses that donated include Lo-Pete Construction, Larry Telfer of REMAX, Don Abel's Building Supply, Valley Lumber and Building Supply, Cameron Plumbing and Heating, Valley Paint Center, Harri's Plumbing & Heating, Lyle's and Jensen Home Furnishings, ERA Helicopter, Steve Rasmussen Alaskan Electric, Pleasants Plumbing and Southeast Interiors.
A grand opening and auction will be held mid-August to celebrate the home and raise funds for furnishings. Items still needed for completion include topsoil, plants and shrubs, a kitchen table and a mattress for the caregiver's apartment. To donate items for the auction, call Tandy at 586-4058.
"Dori has taken on a big task. Her family donated the property and start up money to get that going. I think it's very much needed for children in Juneau. I saw what a hardship it is for parents to do those things for children in their own private homes," Tandy said.
"Dori's spirit is wonderful. I think she's very brave to take this on, especially since she doesn't live here. Her family lives here and saw her struggle. She made a promise to her son that she would do this. Dori has made a real sacrifice in a humble way. It's not for her status but for other families. She doesn't want other families to suffer," she said.
"She's very unselfish, very determined, has a lot of patience and a very good support system."
Anyone who would like to participate on this project can contact Eric Gurley at Hope Community Resources at 463-3602 or Hildre-Chelini at (775) 997-5248.