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Luke was initially diagnosed with Congenital Central Hypoventilation Syndrome back in 2005 which causes Luke to stop breathing at any time. On New Years Eve of 2005, on his 1st birthday, Luke stopped breathing. Fortunately, his father is a Paramedic and knew the right steps to get his son breathing again. Luke was then taken to Geisinger Medical Center by AREA Services Ambulance where he was diagnosed in the emergency room with pneumonia. Luke was allowed to go home for his birthday party but had to return back right after the party to be admitted to Geisinger/Janet Weis Childrens Hospital. The following night Luke stopped breathing again and was placed on a ventilator and moved to Intesive Care where his conditon became worse. Three weeks later after the pneumonia seemed to clear up they was unable to remove Luke from the ventilator so the family decided to have Luke taken to the Childrens Hospital of Philadelphia for a second opinion. Luke was transferred to CHOP by Gesinger Life Flight Helicopter where a tracheotomy was preformed a few days later and then began having other medical problems, such as periods of bradycardia and his heart stopping for short periods of time.. Luke spent exactly 3 months at CHOP until returning home on April 21, 2005 and keeping our fingers crossed has NOT been admitted to the hospital since. Luke's family and friends hold fundraisers a few times a year for Luke to help him get the medical treatment and provide the care that he desperately needs. Luke is still awaiting travel to Cleveland, Ohio. There he would receive a pacemaker much like the one that famous actor Christopher Reeves had. Luke presently has his doctor appointments at Geisinger Medical Center in Danville a few times a month. Since Lukes problems have started, his mother Kelly had to quit her position at Geisinger Medical Center to be with her son full time. His father Leo also had to resign his position as a Paramedic, however he has recently returned to work. Times are tough for the family. Luke has two brothers, Leo III and Logan, as well as a sister, Leah. The medical cost for all of Lukes medications and special equipment make it hard for the family financially. They recently had to purchase a van so that they would be able to comfortably transport Luke with all of his equipment to his medical appointments. This van was purchased through past fundraisers. We ask that you take the time to go through Lukes website and look at all of the information that is provided. Keep checking back often. |
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Items for Purchase | ||||||||||||
Lukes Pictures | ||||||||||||
Fundraisers | ||||||||||||
Luke J. Mirolli Fund | ||||||||||||
Eagles Game | ||||||||||||
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UPDATES! | ||||||||||||
Luke had bloodwork done at GMC (Geisinger Medical Center) in January 2007 which was then sent out to Rush Childrens Hospital at Rush Presbyterian - St. Lukes Medical Center, in Chicago, Illinois. This is where the family is now trying to go for Phrenic Nerve Pacing. The test is called PHOX2B and the cost for this test was $622.00. The test came back negative for CCHS. So what does this mean? It means Luke does not have CCHS which is good, however, it brings the family back to not having a diagnosis for Luke. It is possibe he could only have Hyperventilation Syndrome. The family awaits to hear back from Rush University Medical Center after they receive all of Lukes records. Once they receive the records, they will decide what further testing will be required. The family still waits to hear from Ohio. Hospital staff has stated to the family they are in need of an investor for the diaphragmatic pacer program. They have came close a few times in finding an investor however as soon as the investor finds out that they wont make a fast huge return on their money they back out. How sad, but how true! Any business or any person who can afford to invest, not donate $750.000 to 1,000.000 and not be in a hurry to get a fast quick return, contact the family and they will get you the contact information for the hospital. Right now the hospital has 6 other children besides Luke who need this surgery. Who wants to save a few childrens lives? In May 2008, Luke had bloodwork done to test for a disorder called MECP2. The test was performed at Baylor University in Texas. The results from this test were positive for a disorder called MECP2 mutation, which is typically Retts in girls. Luke is one of about 16 boys in the world that have this. This mutation is affecting Luke's motor functions. This mutation is most likely causing many of Luke's other medical problems. We do not know what the prognosis is because where Luke's mutation is located, it has never been reported in any other child, so they do not have any statistics to compare it to. We are looking into a possible drug study at Kennedy Kriegger in Maryland for Luke where he was seen in July. Insurance will not pay for these visits. A visit to Kennedy Krigger costs $795 plus travel expenses. We still hope for the pacemaker for Luke though if FDA approves this or funding can me obtained for a research study. |