Benefit funds still designated for Nelson family
Jennifer, 16, the daughter of Wes and Nicole Nelson, died Tuesday, January 16, in Omaha, Neb., from Cystic Fibrous related complications.
When Jenn's medical costs reached her health insurance's $1 million maximum, she was partially covered by a state medical program for disabled children, but the program did not cover all of the family's expenses related to the illness or the transplant.
Teams of volunteers in Midland, Philip, Kadoka and New Underwood joined forces in late 2006 to raise funds that would have helped offset expenses for a double lung transplant for Jenn.
Jenn spent a lot of time in her 16 years in the hospital fighting off infections. Thus, the Nelson family has faced tremendous financial responsibility.
Jenn's days started at 5:00 a.m. with a routine of vital treatments and medications. She had to have daily treatments to fight the mucus clogging her lungs and intestines. Enzyme supplements were a routine part of her diet to help her digestive system. For the past two years, Nelson's diet has been supplemented by overnight tube feedings. At her healthiest, she tipped the scales at 90 pounds. But after a series of illnesses this fall, the high school sophomore's weight fell to 83 pounds.
Jenn has been a patient at the University of Nebraska Medical Center frequently since infancy. For years, the family made trips every three months for check ups and could count on one or two hospital stays each year. Her health problems escalated in recent years, frequently involving intensive care and extended family stays.
"People's generosity and outpouring of support for Jenn truly amazes and humbles us," said Jenn's father, Wes.
At the time of her death, a fund established in Jenn's honor through the Children's Organ Transplant Association (COTA) contained more than $40,000. The fund is still available to the family to help cover expenses incurred by the family in caring for Jenn over the past several months while preparing for the transplant. Recent Nelson family travel expenses will be paid out of COTA. Any money left in the account after all bills have been paid will remain in COTA's care to help other children in need of an organ transplant.
COTA's goal is to make sure that no child is denied a transplant because of lack of funds, according to Jesse and Sheryl Hansen, co-chairpersons for the campaign. COTA gave a matching grant of $2,500 when the locally-raised funds reached $25,000.
Several fundraising events that were in the planning stages will continue:
Funds collected at those events and funds still arriving will be designated for the Nelson family, the Hansen's said.
During a farm auction on February 7, money raised during the lunch will go toward expenses incurred by the Nelson family.
There are plans for a "Music Extravaganza" on Wednesday, February 14, in Philip.
A Jon Crane framed print is on display at First National Bank in Philip, for which youth groups and some Midland individuals are selling raffle tickets.
"This effort has touched people, not only in this area, but across the state and in other states," said the Hansens in a prepared statement. "Even after learning of Jenn's passing, people still want to help the family. It's surprising how many people care, and, the need is still there."
The Hansens said it is impossible to thank everyone individually who united to help Jenn, "The response has been overwhelming."
Students at Philip High School and in high schools across South Dakota rallied for Jenn's cause. Even after Jenn's death, an organ transplant awareness night in New Underwood at a basketball game with Philip raised $1,300 for the Nelsons. The New Underwood students and staff had worked hard at decorating with green ribbons, banners and T-shirts, and making people aware of the need for organ transplants.
"We have a lot of kids whose lives are going to change because of Jenn," said the Hansen's statement.
"Special thanks do need to go to The Pioneer Review and Bailey Bergeson, The Rapid City Journal and Andrea J. Cook, and KOTA Territory Television and Shad Olson for all the attention they brought to the campaign," Hansen said.
COTA has assisted with fundraising for more than 850 families to meet transplant-related expenses - direct expenses as well as those extraneous expenses not covered by insurance.
Used cell phones and spent printer ink cartridges are still being collected. Working with the COTA's Recycle for Life program, proceeds from the recycling effort will assist with children's transplant-related expenses. Nationwide, COTA has collected more that 15,000 cell phones in the first year of its recycling program.
Amy Rasing, Resource Development Manager from COTA, said, "COTA is here to ensure that all funds and care given goes as planned, which is directly to the family, helping to pay medical expenses, transportation, prescriptions and meals away from home."
The average transplant ranges from $300,000 to $500,000. Extraneous expenses such as transportation and lodging for the family, and follow-up medical care would be added expenses.