Supporters of Team Lizzie Bell hope to double down on raising funds for programs to assist children coping with serious illnesses and their families.
The nonprofit is having Celebration Casino Night at 7:30 p.m. June 16 at the Stillwell House & Garden, 134 S. Fifth Ave.
“We designed Team Lizzie Bell to focus on community health awareness, on education and on building family strength,†said Kathy Flores Bell. “While we have always focused on the blood and bone marrow donation and research entities, we also look for unique education opportunities and special-needs situations where people need to be supported while they progress through their child’s medically complex journey.â€
Flores Bell and her husband, Mike Bell, co-founded the program as an affiliate of the nonprofit John P. Bell Foundation.
Team Lizzie Bell was named for the couple’s daughter, who was diagnosed at 7 weeks of age with Diamond-Blackfan anemia, a rare genetic disorder in which the bone marrow produces insufficient red blood cells. Common forms of treatment are blood-transfusion therapy and corticosteroid medication, and for 19 years Lizzie required blood transfusions every few weeks. As a result of the anemia and transfusions, she spent much of her life in and out of the hospital.
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In July 2013, Lizzie received a bone-marrow transplant after being matched to a donor from Europe and in 2014 her body began producing its own red blood cells. Now 23, the aspiring photographer’s bone marrow is functioning normally. She and her family remain strong advocates for blood and marrow donation worldwide, and Team Lizzie Bell is committed to promoting blood drives, targeting first-time blood donors and educating the public about the life-saving importance of donating blood on an ongoing basis.
“Lots of tributes in the community raise money for kids who are sick, but we couldn’t raise money to do what we needed. People had to donate blood or our child would have died. This community wrapped their arms around Lizzie’s life and then she lived,†said Flores Bell.
Team Lizzie Bell is also dedicated to supporting Banner-University Medical Center on several fronts, ranging from education and technology to research into pediatric hematology. To aid in that endeavor, the nonprofit donates proceeds from the Lizzie’s Loot cookies sold at eateries throughout the hospital.
“Anemias are marrow-failure conditions and are often viewed as precancerous situations since they involve blood and marrow, so we like to support research of hematology and oncology projects. I like to remind people that ÃÛèÖÖ±²¥â€™s pediatric research center was started in ÃÛèÖÖ±²¥. Many people think it was created in Phoenix since they have large amounts of resources. We ÃÛèÖÖ±²¥ans should be very proud of all that we offer children medically in this community,†said Flores Bell.
Education initiatives include continuing education scholarships for pediatric nurses, social workers and child life specialists; funding of speakers for educational conferences; boot camps for practitioners in the emergency department; pet-therapy projects and a variety of other endeavors.
The latest project is the Lizzie Bell Hospital School Endowment benefiting the UA College of Education. The unique partnership will feature a hospital school program designed to provide educational support to sick children.
Just as importantly, Flores Bell said, the program will offer assessment and intervention services to track cognitive, academic, social-emotional and interpersonal outcomes with regard to medical condition, treatments and absences from school to attain data that will aid families in negotiating the legislative and logistical challenges associated with hospitalized youth.
“I can’t tell you the magnitude of what this means for families. The last thing a family needs when they have a medically challenged child is to go into a school system where the teachers and administrators don’t have the resources to support the children. In order to get support, we need research. Solid research from this collaboration between the UA College of Education and an academic medical center is a first in the country and we want to support that,†Flores Bell said.
Providing practical resources to support the children and their families are also priorities of the program, Flores Bell said.
Those resources range from “medwagons†for infants and toddlers to gift or gas cards and toys — the program provides special stuffed animals for children in the emergency department as well as more than 10,000 toys monthly for inpatients and outpatient clinics.
“It is these little things that help the heart of the child to hang on and sustain hope,†said Flores Bell.
Flores Bell said small items like gift cards to restaurants and stores or gas cards can be lifelines for families dealing with the financial ramifications of a child with a serious illness.
