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Kylie's Law

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Right now Albany, New York Support Services, of the New York State Education Department, RN, BSN, says that only an RN or LPN can administer Rectal Diastat aboard a school bus and that anyone else that has been trained by the epilepsy foundation, like a CNA, could face a Felony Charge if they administer Diastat to a child within the 3 minutes of a seizure as instructed on the kit, to save a child's life. Before 2002, a EMT was allowed to carry and administer Diastat on a school bus in New York State, then they changed the law! WHY?,  The school district's say their budgets have been cut and they can't afford $46,000 to $50,000 a year for an RN or LPN to ride the school buses with these kids that have seizure disorders.WE NEED TO CHANGE THE LAW, so that a trained CNA or Even put it back to a EMT aboard a school bus, can administer this much needed medication for Children with Seizure Disorders and not face a Felony Charge! Call It "Kylie's Law", Kylie's story was shown on 13wham news with Patrice Walsh on 10/3/2011 http://www.13wham.com/news/local/story/kylie-hurt-school-bus/qiP3hbsU-EWe8E_WwnhSaA.cspx , we recently found out that they have now disabled this interview/video.  My disabled granddaughter, Kylie, whom I am guardian of, needs her Rectal Diastat within 3 minutes of a seizure or she could suffer more brain damage or possibly die. Kylie suffered a stroke in utero that has effected her whole left side. Needless to say Kylie has many other health complications including, significant & extremely rare congenital disorder of the central nervous system malformation, porencephalic cyst, agenesis of corpus callosum, nodular heterotopia, Epilepsy, Aspergers, ADHD, Anomaly Of The Brain, Spinal Cord, Hypothyroidism etc..  she's had Cranial Surgery 10/2004, Heel cord surgery in 2007, heart surgery in June of 2008 to repair 6 holes in her heart, two devices were placed in her heart at that time an ASD & CRIBIFORM, she's also had G.I. procedures in 2010, sleep apena testing, eeg's, MRI's, CT scans and on June 13th, 2012 had surgery on her left eye to try to correct her impaired vision due to cortical vision impairment. Kylie also has a rare Genetic Mutation never seen before, as we have been told by her Genetic Specialist, it involves the Xp32.33 Chromosome and 17p33.3. . Kylie has been transported by Kendall Ambulance & Monroe Ambulance many a time with life threatening seizures, some she has endured over 40 minutes documented with Diastat in her, some she has stopped breathing with also. Kylie can't attend school at Mary Cariola for the disabled in Rochester, NY from our home in Kendall, NY without that Diastat Kit, I'm not allowing it and refuse to endanger her life. In Pre-School I was hired, as her legal guardian, to ride the bus with Kylie so I could administer her Diastat in case of an emergency seizure, in Kindergarten, I took her back & forth to school myself while carrying her Diastat Kit to Holley School, in 1st grade from Kendall, NY to Spencerport, NY, I was hired by Kendall School District to ride the bus with Kylie, to "Help Them Out" as the Superintendent stated, CSE notes that were found show it was suppose to be "Temporarily", so I could carry & administer her Diastat Kit if needed during a seizure as her legal guardian, on EVERY I.E.P. was "Nursing Services", they knew. On August 19th, 2011, I was told I had bilateral breast cancer, two different cancers, very rare, I am now unable to ride the school bus with Kylie and immediately let the Kendall School District know, due to my surgeries & treatments, etc..  Kendall School District is an hour one way, in "good weather" to Mary Cariola School in Rochester, NY, in "bad weather, snow, icey rain, etc", it could be 1hr. 30 minutes or more one way.(I am presently back riding with Kylie THIS school year of 2012-2013, due to no RN/LPN being hired by the Kendall school district and we are on the bus right now 1 hour 30 minutes in GOOD Weather one way and we have already been involved in one bus accident on Oct.25th, 2012, we WERE on the school bus for 2 hours one way until I asked if I could be dropped off with Kylie and enter the school at 8:20-8:30am and not wait two hours on a bus, so Kylie can eat breakfast and go to the bathroom! My concern has been, how much longer I will be able to do this with a hampered immune system & what if the cancers come back?) How many more children out there with seizure disorders need their Diastat Kits aboard a school bus? How many more school districts aren't complying with the law due to "budget cuts?"  or is it they won't because then they can't buy those  new "sports uniforms" or "put lighting on the sports fields for night time events?" , so instead, we choose to "endanger the welfare of a child"?", Let's get our priorities right! On 9/1/2011, The Kendall School District recieved a letter stating Kylie needed a "trained person to administer her Diastat from "Strong Pedatric Neurology" since I couldn't ride the bus with her now, so they hired  & trained in Epilepsy, a CNA to ride with Kylie who carried her Diastat Kit aboard the school bus from 9/19/2011 to 9/22/2011 to Mary Cariola & back until the afternoon of 9/22/2011 when I was asked by Mary Cariola to pick Kylie up when they found out the law & so did I! I found out from an ARC Educational Advocate's e-mail & called the number to Albany, NY's, Karen Hollowood, head RN, BSN of Support Services, etc.,  to confirm what I was reading, that this was illegal for school districts in New York  to do and also that the CNA could face a felony charge! I notified our school district because I didn't want ANYONE charged with a FELONY that was trying to SAVE my granddaughter's LIFE! These school districts "way of getting around the NY State Law" at this point, is to take away a Diastat Kit aboard a school bus & REMOVE "Nursing Services" from her I.E.P. WITHOUT a proper CSE Meeting, that's what they did to Kylie on 10/4/2011, they allegedly got THEIR school doctor to say this now and allegedly with Kylie's "now past" neurologist, the SAME neurologist that wrote that letter to them on 9/1/2011, because this neurologist's excuse was, "If we do this for Kylie, we would have to do this for all our seizure kids that need Diastat aboard a school bus and none would be able to attend school! We didn't know this was the law!" My question to YOU is this, "Shouldn't all children with seizure disorder/epilepsy be protected with their needed medications?"  This SAME Neurologist who "changed his mind" told me, " to continue to have an emergency Diastat Kit on hand at home & to carry a kit with us for emergency seizures where ever we travel and Mary Cariola School was to have one on hand to administer to Kylie also within 3 minutes",  now here is my point, Mary Cariola School is maybe 3-5 minutes away from Strong (Golisano Children's) Hospital, Plus this Private school has several Nurses available on their premises, but yet they don't want to make the medication available aboard her school bus route?! This makes NO SENSE! Kylie's New Neurologist, who she has been seeing since October of 2012, reviewed Kylie's medical records, has run updated EEG's & M.R.I.'s and stated several times to this school district, in writing, that Kylie needs that Diastat Kit aboard the school bus and also put in writing to hire the nurse to provide the administration of the drug if needed...The Kendall School District still won't comply...Kylie's Family Physician, that has had her as a patient since age 2 years, also wrote the Kendall School District a letter and outlined everything, explaining why it was necessary for Kylie to have her Diastat Kit available aboard her school bus and still...The Kendall School District will not comply, it's now left up to me, a  Breast Cancer Survivor with a weakened immune system to do the job, (they have no consideration for my health at all and haven't through this whole process), IF I want my granddaughter to obtain a decent education & all her therapies! Either Change the Law, like we are asking, or make these School Districts, like Kendall CSD, comply with the NY State law that's on the books, simple as that!, not take Children's Diastat kits away on a school bus that need that life saving medication in a hurry, (3 minutes of a seizure) and MAKE THEM hire the LPN or RN that is needed to administer this medication!  We are hoping to update "Kylie's Story" with some Good News, help us with changing this Law on the books in Albany, NY, for ALL THE KIDS that need their Seizure Medications administered within 3 minutes of a seizure to save their lives, THIS IS THEIR LIFELINE.  My granddaughter wants an education, she needs her therapies & education at Mary Cariola School in order to continue to progress in her life, but we need to get Kylie there & back home SAFELY and that means, she needs that Diastat Kit and trained person on board to administer it, who knows how much longer I will be able to do the job. I think I've more than did my part as her guardian, in safeguarding Kylie's health, now it's time New York State, Albany, NY, Kendall School District, other school districts, Senators, Disabilities Rights Leaders, Epilepsy Foundation, etc. did their part! Gov. Andrew Cuomo stated in a "past" address to us New Yorkers, where he brought up education in New York, that he will be the "Lobbyist for our Students", this is your chance Gov. Cuomo to take that action and either enforce the law on the books in Albany, NY with the Kendall CSD/CSE or rewrite & change this law to "Kylie's Law".  If I were to allow Kylie to "seize" for 20 minutes or longer before a response from an ambulance could arrive, without giving her that Diastat Medication, What do you think I would be charged with under NY State Law? I have been told by many ALS/EMT's, that response times are 20 minutes or more and this solution of just pulling over and calling 911, that the school districts are coming up with, is just plain crazy! Please help us fight for what is right. REMEMBER, "NO CHILD LEFT BEHIND".  Parents & Guardians shouldn't be "Held Hostage" to ride with the medically challenged child, UNLESS the parent or guardian FULLY agrees and the school district wants to give benefits, vacation & sick days and a decent wage an hour to do so, just like the "hostage person" would be able to obtain at any other Full Time Job that met their credentials! School Districts also shouldn't be allowed to "Bully" parents or guardians! Thank You.

Sincerely, Audrey L. Dezen Grandmother/Guardian to Kylie Hurt & Recent Breast Cancer Survivor



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