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Children with Diabetes Helps Orlando Family In Need

Orlando residents Teri Mazziotti and her 12 year old son, Matthew, brought statewide attention to type 1 diabetes last Monday as they shared their family's story as part of a rally to kick off National Diabetes Awareness Month. The rally, organized by the Los Angeles-based Pump Girls and the internet-based ChildrenwithDiabetes.com (CWD), included performances by the Pump Girls, an address by State Representative Allen Trovillion, stories of family tragedy and triumph, and a touching memorial award to the University of Florida - Gainesville.

Both Teri, 31, and Matthew Mazziotti have type 1 diabetes and rely on multiple daily injections of insulin to keep them alive. Their story of struggle came to the CWD family e-mail listserv network late last winter after Teri braved a leg amputation, intense therapy to save her other leg, and costly rehabilitation which lasted months. This hospitalization cost Teri not only her left leg, but her entire savings. Teri and Matthew were able to access state assistance, however the level of help for which they apparently qualified did not in reality provide any help at all with the daily needs of type 1 diabetes.

This is where CWD families entered the story. Following a panicked email from Teri's sister that Teri and Matthew were down to their last 1/2 bottle of insulin and nearly out of meter strips, a request was sent to CWD families on the parent listserv to send any extra supplies to Teri to help with this immediate emergency. CWD families rallied. Boxes came from all over the country filled with extra syringes, insulin, and test strips -- a little from everyone -- enough to get by for several weeks.

The email request was also seen by the Pump Girls, a teenage rock group from Los Angeles all of whom wear insulin pumps. The Pump Girls are frequently involved in type 1 advocacy efforts and volunteered to perform in Orlando for a rally to celebrate National Diabetes Awareness Month and to bring attention to the needs of the Mazziotti family. The Pump Girls further spoke with their corporate sponsor, MiniMed, about the Mazziotti family, and MiniMed agreed to donate a year's supply of syringes (over 3,000) and a six month supply of test strips to Teri and Matthew.

Further corporate donations followed. Reli-On, in partnership with Novo Nordisk and Wal-Mart, donated a six months supply of insulin. TheraSense donated two FreeStyle blood glucose monitoring systems and strips for a year. FlexSite Diagnostics donated a two years supply of HbA1c home testing kits. These supplies were all gathered for presentation to Teri and Matthew during the Rally.

The Rally was led by Laura Billetdeaux, a CWD parent and mom of 10 year old Sam and 13 year old Carolyn. She shared the purpose of the rally: to bring greater awareness of type 1 diabetes to Florida residents; to let people know of the help afforded by organizations such as ChildrenwithDiabetes.com; to focus attention on the Florida Medicaid system that allows families such as the Mazziotti's to slip through the cracks; and finally, to bring direct assistance to Teri and her son.

Florida Representative Allen Trovillion addressed the crowd and promised to review the Medicaid eligibility guidelines and bring revisions to Florida's State Health Care Committee. He pledged to work on these issues immediately and to report back to the CWD participants at this year's July conference in Orlando. In conversations held before the rally, Representative Trovillion was surprised to learn of the prevalence of type 1 diabetes and of its high incidence in children. He was particularly interested in pump technology and the cost/benefits of pumping vs. multiple daily injections (MDI).

The Pump Girls performed two sets and received an encore from the news crews! The three dynamic teenagers, all age 13, also showed off their insulin pumps to the crowd and demonstrated their use to those who had specific questions. The Pump Girls, assisted by Lori Adams from MiniMed and Laura Billetdeaux from CWD, then presented the donated supplies. Actually, the supplies on stage - filling a large rubber dumpster on wheels - were only a token of the diabetes supplies delivered to Teri and Matthew's home. As one reporter who'd visited their home commented, "The bedroom closet looks like a pharmacy!"

Teri was overwhelmed by the donations. She gave a tearful speech thanking all the CWD families for sending so many supplies and "saving" her and Matt. She called the families "her angels" and said that their generosity had restored her faith in a loving, caring world.

The Rally continued with a presentation from the Children with Diabetes Foundation to Dr. Michael Clare-Salzler from the University of Florida - Gainesville, for his research in Type 1 prevention. This $10,000 award was presented in memory of Jonathon and Justin Janolis, two youngsters in the CWD community who died this summer in a tragic drowning accident. Dr. Salzler spoke about his research and requested a moment of silence in honor of the boys.

The Rally finished with personal interviews and photos with Teri and Matthew, the Pump Girls, Representative Trovillion, and Dr. Salzler. It was a tremendous kick-off to National Diabetes Awareness Month and did, indeed, bring much needed attention to Type 1. Tune in next July 18 - at Disney's Coronado Springs Resort - for an update!

Laura Billetdeaux
Events Coordinator, Diabetes123 and Children with Diabetes

12 November 2000



                 
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Last Updated: Thursday February 27, 2014 19:28:21
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