Luke J. Mirolli Mdical & Living Expense Fund
$10 raised
1% of $2k goal
1 contributor
5 Years running
Luke is an eight-year-old boy who stopped breathing on his first birthday, and had to have a tracheotomy done and placed on a ventilator. He was diagnosed with Chronic Central Hypoventilation Syndrome, which is a rare breathing disorder along with ...
Luke is an eight-year-old boy who stopped breathing on his first birthday, and had to have a tracheotomy done and placed on a ventilator. He was diagnosed with Chronic Central Hypoventilation Syndrome, which is a rare breathing disorder along with many other medical problems. In 2008 Luke was diagnosed with a rare disorder known as MecP2. This disorder is a form of RETTS Syndrome in boys. There are only 16 reported cases in the United States. MecP2 affects his mobility. At this time there is no cure for MecP2, but research is being done throughout the country and clinical trials have begun in different parts of the country like in Boston, MA, where Luke awaits approval since trials are being done with girls only at this time. Luke has spent five months in the hospital since his birth away from home. Luke has been home from Children’s Hospital of Philadelphia since April 21, 2005. Since then Luke has only ever been admitted to a hospital once and that was the Janet Weis Children Hospital in Danville for two days in March, 2011 due to blood work issues. Medical professionals find it absolutely amazing that with Luke’s medical problems on how that’s possible to keep him out of the hospital, but we believe with great care provided by the family and Luke’s home nurses this is how its possible. In addition Luke STILL awaits another new state of the art procedure called a diaphragmatic pacer, which is a pacemaker for the lungs so that he may be able to come off the ventilator. This operation would be performed at Rainbow Children’s Hospital in Cleveland, Ohio. This procedure was supposed to have been done for the last four years, however due to the hospital being unable to receive financial funding the operation has been put on hold until they find an investor(s) for the program. Luke is now also being seen at Kennedy Kreiger due to his new diagnosis which is not covered by insurance. One visit to the specialist at Kennedy Kreiger cost $749.00. In January of 2012, Luke will be going to see a research doctor for Retts at A.I, Dupoint Hospital for children in Delaware. Luke’s Mom and Dad continue to search for every possible treatment options for him, and to hopefully one day to find a cure for him and this disorder. It is very difficult for Luke’s Dad & Mom to hold down full time employment like they have in the past before Luke’s illness due to his extreme healthcare needs. Luke requires constant care and needs a lot of equipment that his family is unable to afford and is not covered by any type of insurance. Numerous fundraisers were held over the last few years to help defray costs associated with Luke’s healthcare needs and without past business support they wouldn’t have been made possible. We thank you and the Mirolli family thanks you for any past support you may have given.
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