To Save a Life: Medical & Travel Expenses for Metabolomic & Genomic Testing of CSF Fluid for diagnosis & Treatment:
Dear friends and family, we are looking for those of you who might be generous enough to be willing to help us out and donate to the next major testing that needs to be done for Lerlene’s care. It will not be covered by insurance and requires us to travel to a special clinic in Pittsburgh. But, before submitting to surgeries that implant permanent electric objects into her brain and body… we want some additional testing done neurologically… and specifically on the metabolomics and neurotransmitters in her CSF fluid. To our knowledge and to her doctor’s awareness, there is currently only one lab in the entire nation doing this testing. This clinic is headed up by medical doctors from the University of Pittsburgh that specialize in Neurology, Psychiatry, Neuroimaging, Endocrinology, and biochemical genetics work. To get the testing done, we will need to pay at least 10K out of pocket, and we will need to travel to Pittsburgh, PA. As many of you know, she has had significant health problems for a number of years. She has been hospitalized multiple times across nine hospital stays totaling 109 days in the last 3 years (not including any in hospital sleep studies or eeg’s etc or outpatient procedures under anesthesia). In the last 2 months Lerlene has undergone treatment under full anesthesia 22 times as an outpatient. There were weeks and months last year and this year that we have gone in for medical treatments 5 days a week. From her mental health (autism, major depression, adhd, severe anxiety, etc.) to her cardiac, sleep, gastrointestinal, neurologic (including tremors), energy problems, joint hypermobility, excessive autoimmune allergy issues (MCAS) and dysautonomia (and POTS) issues, we are indeed in a fight for her life. We have learned that when you exceed the maximum out of pocket with insurance… it means little. There are a litany of expenses that are not included in the max out of pocket. The testing that she needs now is simply not covered. Beyond that… insurance regularly simply denies charges, and those charges fall to the family of the patient with little regard as to max out of pocket. Countless hours have been spent on the phone to rectify these issues… usually to no avail. However, all that matters right now is getting answers that can turn Lerlene’s life around. Will any of you join us? If you will… please text Wendy 832-461-6600 or private message her me on FB messenger. If we can get enough people to join, we know that we can cover this. Yesterday we stepped out in faith. We forwarded doctor’s referrals and filled out all of the paperwork with the clinic to move forward with the testing. On an individual basis, (if you want – just ask) I am happy to share more details about the precise testing we are pursuing so you can see how the funds will be spent. Also… we are willing to bake yummy gluten free goodies for fundraising… send us your order… and Christen says he is also willing to mow lawns for donations of whatever you want to give. We pray you will step in with us and join us in her fight for her future! We believe in life… and will do anything to fight for it.