On The Beach
With Beverly Baxter
Behind The Strength Of Every Parent, The Face Of A Beloved Child
By now you’ve probably all heard of Joe Mure. During the past ten years that he has resided here he has certainly made his presence known—but only with regard to his cause: The Juvenile Diabetes Research Foundation. Joe has put a face on this disease that afflicts millions. Each year during the Christmas season, he illuminates the cause by illuminating his home; turning it into a veritable Little North Pole. His winter-wonderland has become a beacon shedding the light of awareness on the disease and the dire need for a cure.
In recognition of his relentless efforts, Mure was recently honored by the Brooklyn/Queens Chapter of the Juvenile Diabetes Research Foundation and bestowed with its Humanitarian Award at its Queens and Kings Ball held at Russo’s-on-the-Bay. While the evening was indeed a successful benefit raising several hundred thousand dollars for Diabetes research, as well as a celebration of one man’s extraordinary endeavors on behalf of JDRF in furthering its cause, it was Mrs. Maritza Mure who captured the hearts of the nearly 750 people who were in attendance.
Although she was not listed on the program, Mrs. Mure was called to the podium with her two small children in tow and told her husband, “Joe, you look great, but this is really not about you. This is about all the children who suffer from this horrific disease.” She then addressed the audience. “I’m going to tell you a little story about a little boy. A little boy who’s five years old. A little boy who last year spent the best summer of his life—playing on the beach in Breezy, collecting seashells and building castles in the sand ...Then he started kindergarten. The first week, the boy was crying cause he didn’t want to let go of his mother. The second week, the mother was crying cause she didn’t want to let go of her little boy. By the third week, the boy told his mother that the teacher wouldn’t let him go to the bathroom. The mother was enraged and couldn’t understand why. Then she ran into another mother who told her that her little boy seemed “spacey”. That night, while doing homework, the mother notices that the little boy was going to the bathroom every ten minutes-within the hour. She asked, “Do you do this to your teacher all day long?” and the little boy replied, “Yes! ‘cause I have to go to the bathroom!” The mother went to the father and told him that something was terribly wrong. They called their Pediatrician who told them to, “Get to the hospital right away.” By the time they arrived at Schneider Children’s Hospital at L.I.J., the mother was drenched all over with her little boy’s urine. Within three minutes of giving them their son, the little boy was hooked up to an I.V.. When the Doctor came out to speak to the parents, he told them, “Your son is Diabetic and will be Insulin dependent for the rest of his life.” The panicked mother asked, “What does that mean? What does that mean?!” And the Doctor replied, “It means that you and your husband will have to learn how to care for your son and your lives are about to change...forever.” This story I just told you is about my son. His name is Michael Mure and he has Juvenile Diabetes.
The Mures returned home that evening on September 29, 2004, but they did not return to any semblance of the normal way of life they had known. From that moment on, Michael would need to receive five Insulin shots a day; his tiny arms riddled with needle marks. In addition, every carb that goes into his mouth has to be counted and his blood sugar levels have to be tested around the clock every three hours, eight to ten times each day. “It’s not something he will ever out-grow. This is our life and the life of the thousands of children who suffer this disease.” states Maritza.
Since Michael is a little boy, when he was first diagnosed he didn’t know how to communicate to his mother how he felt or whether he was feeling “low”. Maritza had to teach him that if his body isn’t feeling right, then he is probably low. In the beginning, he had to be tested every two hours—even while at school where he is accompanied by a Nurse, as well as by a Para. He must be tested before lunch and snacks, and Insulin must be administered after each meal.
An ordinary whimsical day in the life of an innocent healthy child is one that is filled with constant challenges for the child who has Diabetes and fear for the parent. Everyday joy-filled occasions outside the home like play-dates, birthday parties, sleep-overs, or running to the ice-cream man and trick or treating simply don’t happen as they would for the healthy child. Mrs. Mure gratefully acknowledges the tremendous support of other mothers who have, since Michael’s diagnosis, generously gone out of their way in making special arrangements to accomodate his special needs. “When I take Michael trick or treating for Halloween so many mothers will have sugar-free or diabetic candy so that he can be included in the festivities.”
Although food intake is a major factor effecting the level of blood sugar, so is the emotional mood of a child. If a child is over-tired, cranky, or upset, this can have a profound effect on their sugar levels. Even the altitude of an exciting plane ride en route to a family vacation can pose serious danger. “When we have healthy children, there is so much we take for granted”, states Maritza. “This isn’t just about Michael. This is about a day, everyday, in the life of every child who lives with Type 1 Diabetes.”
The Mures have made the cause for a cure their personal quest. Joe Mure is the Founder and President of the JDRF Brooklyn/Queens Branch of the New York Chapter. In addition to the public celebration at their Little North Pole, the Mures also personally host a benefit cocktail party in their home, an evening of Wine Tasting at London Lenny’s, and a Walk-For-A-Cure each October at Flushing Meadow Park. It could also be appropriately called Mure-For-A-Cure as it is utterly galvanic the impact that one man has had on fighting this dreadful disease. Yet it takes a village...an entire community to recognize the need for, and help fund, a local Diabetes Treatment Center. Although the Mures have made recent endowments to Peninsula Hospital Center for the creation of an Adult and Juvenile Diabetes Treatment Center, many parents still take their children out of Rockaway. Joe is currently speaking with the Naomi Barry Diabetes Center at Columbia Presbyterian and Robert V. Levine, President and Chief Executive Officer at PHC, to see if an affiliation may be formed since there are quite a few children who reside on the peninsula who suffer from the disease and need local care. For now, the Mures continue to do all they can with what they have to help in the advancement of a cure. “If Michael can be a symbol for other children with Juvenile Diabetes, then that’s what keeps me going.” states Maritza. The Mure’s wish to thank the many Rockaway people who attended the gala at Russo’s.
Together, we can join Michael’s salvo: What do we want? A cure! And when do we want it? NOW!
***My condolences to the family, friends, and customers of Robert (Bobby) Krinis, the much beloved owner of Robert’s Hardware Store. His sudden passing has left an entire community mourning the loss of a really great man. He was a cherished fixture around our town and one who will be missed.