“The Relief Fund serves as a lifeline for these struggling parents,” said Department of Human Services Commissioner, Jennifer Velez. “These grants allow them to focus on what’s really important and to resume their lives faster, without burdensome debt threatening to disrupt their lives even more.”

Janice Prontnicki, MD, Commission Chairperson and public member, noted that since 1989, the Commission has approved grants totaling over $149 million for over 6,448 families.  “The families have their own unique stories to tell but are not unlike most New Jersey families who work hard to pay their bills.  Yet when faced with the daunting challenge of caring for a child who is ill and dealing with mounting medical bills, their daily life can be overwhelming.” Prontnicki said.

Several families who have benefited from the Fund and now serve as volunteers on the CICRFC Family Advisory Committee also attended the  annual meeting. “I would like to personally thank those families here today who continue to extend themselves despite their own difficult circumstances.  Your efforts to assist other families have helped make the program successful and rewarding,” said Claudia Marchese, Executive Director of CICRFC.

Families of any income may qualify for financial help if a child’s unreimbursed medical and related expenses exceed 10 percent of the family’s annual income up to $100,000, plus 15 percent of any income over $100,000.  The Fund does not restrict coverage to a specific diagnosis or condition and covers hospital and physician bills, medications, disposable medical goods, medical equipment, medically related home and vehicle modifications, transportation, and home care costs.

Children 21 years or younger are eligible, and families must be State residents. Expenses must have been incurred during a previous 12-month period.

“We define ‘catastrophic’ in terms of the economic impact a child’s illness has on the family,” said Marchese.  “A family may have health insurance, but coverage can be inadequate when a child has a serious illness or injury.  The Fund can help families avoid financial crisis and return to the routine responsibilities of life.”

While legislation creating the Fund protects the anonymity of families who have received grant awards, several families attended the annual meeting to share their experience as a way of encouraging other families in need to apply for assistance.  (See family profiles below.)

For more information regarding the Catastrophic Illness in Children Relief Fund, call Claudia L. Marchese, Executive Director, at 609-292-0600 or the Family Information Line, 1-800-335-FUND.  Also, visit the Fund website at www.njcatastrophicfund.org

Families in Attendance on September 12, 2013:

Jonathan and Amanda Miller with their 4 year old son, Evan of Little Egg Harbor, NJ

Evan is diagnosed with a rare, genetic disorder that affect his metabolism.  CICRF was able to assist the family with the cost of out-of-state specialty children’s hospital expenses, pharmacy copayments and the cost of specialized formula that was not fully covered through their health insurance.

William and Lisa Nivison and their 22 year old son, Eric of Hillsborough, NJ

Nicholas is diagnosed with a non-progressive condition that affects muscle movement. He uses a power wheelchair for mobility and a communication device. He also has a service dog.  CICRF assisted the family with the cost of purchasing a modified vehicle and the cost of purchasing durable medical equipment.

Craig and Linda Keil and their 23 month old son, Nicholas of Manahawkin, NJ

Nicholas is diagnosed with a rare genetic disorder and a rare brain disorder.  CICRF was able to assist with in-state and out-of-state hospital expenses as well as physician expenses

Sethu Ramasamy and Sutha Rajaguru and their 3 year old daughter, Keerthi of Monmouth Junction, NJ

Keerthi was diagnosed with a tethered spinal cord at birth. She required specialty surgery to release her spinal cord.  CICRF was able to assist the family with the cost of this surgery and her follow up care.

Lisa Hawbecker and her 5 year old twins, Adam and Lily DePasquale from Moorestown, NJ

Adam and Lili are both diagnosed with a non-progressive condition that affects their muscle movement as well as an autism spectrum disorder.  CICRF assisted the family with uncovered costs for durable medical equipment, occupational therapy, and applied behavior analysis.

Tracy Boudreau with her 12 year old son, Aidan Murphy from Bayville, NJ

Aidan is diagnosed with a degenerative, neuromuscular condition. He uses a wheelchair for mobility and needed modifications to his home.  The family added an accessible bedroom and bathroom on the ground floor for Aidan. CICRF was able to help the family with these expenses and also assisted with the cost of a hospital bed and durable medical equipment.

Michael and Christina Geiger and their 20 month old son, Trent from Marlton, NJ

Trent was diagnosed with a milk protein allergy after he was admitted to a specialty out-of-state children’s hospital for testing and treatment.  He was uninsured at the time of the hospitalization and the family did not qualify for Charity Care. CICRF was able to assist the family with the cost of the hospitalization, physician expenses, and the cost of the prescription formula that was his only form of nourishment.

Travis and Natalie Cunningham and their 16 year old daughter, Emma from Toms River, NJ

Emma is diagnosed with a non-progressive condition that affects movement. CICRF was able to assist the family with the cost of purchasing a modified vehicle to safely transport their daughter.  The family also received assistance with the cost of physical therapy that was not fully covered by insurance.