Helping hands for the seriously ill

Two years ago, when Bella Adlah was 15, she suddenly felt numbness and tingling in her hands and feet. Over the next eight months this accelerated to the point where she couldn’t eat or speak, couldn’t feel anything below her shoulders, and was having up to 10 seizures a day. Her mother, Linda Adlah, spent those eight months with Bella “going to multiple doctors, having multiple tests,” she said. “Each doctor’s appointment would always start out hopeful. But always end in frustration.”

Finally, Bella was successfully diagnosed with functional neurological disorder caused by an abnormality in how the brain functions. The only treatment for the condition is intensive physical therapy, which presented another challenge for Ms. Adlah.

There are very few centers to treat the disorder, and one of the best is in Southern California. Ms. Adlah and Bella, and her other daughter, Gabrielle, 16, were living in Reading, Mass. She moved the family out west and stayed in California for awhile, which was a financial burden, although Bella responded well to therapy. The family headed back to New England.

But Bella regressed, and it was suggested she come back to the therapy center for further treatment.

Faced with the prospect of the expense of moving and setting up house in California was daunting, to say the least, Ms. Adlah said. But aid arrived from one of Shelter Island’s most caring nonprofits, The Island Gift of Life, which helps with the often crushing ancillary costs to families facing serious illnesses.

A board member of Gift Of Life had heard of Ms. Adlah’s situation and the nonprofit granted funds so she, Bella and Gabrielle could move to an apartment in Torrance, Calif., close to the therapy center, and set up a home.

The nonprofit normally helps Islanders and East End residents, but Ms. Adlah had a strong Island connection, especially through her aunt, Charlotte Hannabury, whose daughter, Cheryl, in the early 1990s, con’tracted stage IV non-Hodgkin’s lymphoma and had no health insurance. When she learned she’d need a bone marrow transplant, the Island community came together, for an Island Gift of Life Foundation benefit. The foundation began as Cheryl’s and Charlotte’s dream, which their friends and family brought to life.

The charity continues to provide financial support to families of people suffering life-threatening diseases — particularly expenses not covered by health insurance — and to encourage people to register as bone marrow donors.

AT A CROSSROADS

Joesph Kelly, president of The Island Gift of Life Foundation, moved with his wife Susan from Bridgehampton to the Island eight years ago and was seeking ways to help residents of their new home who were in need. The financial aid offered by the foundation to recipients is, of course, paramount, but almost on equal footing, Mr. Kelly said, is the knowledge that a person, and their family, going through a serious illness, is not alone but has support.

“People suddenly feel fear, overwhelmed by a lot of information, and can feel adrift and alone,” he said. 

The organization itself is at a crossroads, Mr. Kelly said. One test for the organization is replacing board members who are retiring after serving for a number of years. “I think immediately of Gina Kraus, who personified tireless engagement in helping others,” he added. 

In addition, the COVID pandemic struck and “changed everyone’s world,” Mr. Kelly said, including organizations that count on gatherings for fundraising.

He sees three challenges for Gift of Life. One is getting the word out that they’re here to serve. “We know people are out there who need help,” he said. “But we’re not hearing from them, and we want to be relevant to them.”

The Island Gift of Life also needs people to step up to serve on the board. 

“We want to be nimble, to have people who have skills to help our mission,” Mr. Kelly said. “We know they’re out there, too.” The Gift of Life is seeking people to volunteer with special insights in health care and finances, to name just two. 

The third challenge is financial support. Mr. Kelly said the nonprofit operates with very little overhead and is all-volunteer.

“We have a little nest egg, not enough to call an endowment,” he said, and the organization is now in a new phase of fundraising. “We’re regaining our sea legs post-COVID,” and an annul community event is in an early planning stage, similar to past gatherings at the Ram’s Head Inn to raise money, possibly in early 2023.

Anyone interested in helping is urged to go the website, islandgiftoflife.org, or phone a board member, listed on the website. Or write: The Island Gift of Life, PO Box 532, Shelter Island Heights, NY 11965.

“We are 100% confidential,” Mr. Kelly said. “We’re pleased to help people with, for example, transportation, gasoline, childcare, helping people with a few hundred dollars to thousands,” he said. “We can fill in the gaps for people who need help now, to put food on the table, or pay for jitney rides to hospitals in the city, so they don’t have to make a choice of going or not. No request is too small.”

Another service the Gift of Life can provide is helping families negotiate bills with health care providers, to navigate through often complicated systems of insurance and medical organizations.

NO BETTER PLACE

Cliff Clark noted his family and his business, South Ferry, have been “supporters and beneficiaries.” In the former, the ferries have been donated for fundraising cruises, and for the latter, Gift Of Life helped the family when Mr. Clark’s son-in-law Nicholas Morehead battled cancer before succumbing at age 46 in May 2021. Gift of Life helped the family pay some hotel and food bills when Mr. Morehead spent time in New York City undergoing cancer treatment.

“But it was much more than money,” Mr. Clark said. “It was knowing that individuals and a community care. People here fight and squabble over things — politics, for instance — but when people need help, there is no place better than Shelter Island to lend support and aid. Maybe other places are as good, but none are better than Shelter Island.”

“We can’t solve every problem, but we can refer people to those who can help,” Mr. Kelly said.

“Our mission is to help people who are overwhelmed, who might have a sick child, or a sick parent, and we can take on the burden of all those phone calls and pay some bills. Remind them that we are here for them.”

Ms. Adlah, with Bella in California as she undergoes treatment, said Gift of Life has provided financial relief and some peace of mind for her family, but also is a continuing connection to the Hannaburys and to the generosity of Islanders.

“My aunt would be so proud of her mission and what she wanted for people,” Ms. Adlah said.

To get in touch, the website is islandgiftoflife.org.