For the Luv of KC

 
FOR THE LUV OF KC…HER STORY….
           I live with hEDS, POTS, Chiari 1, Gastroparesis, MCAD and Plexus Nerve Damage. I want to convey a     heartful thank you to those who have already donated, prayed and continue to support me.
           I have traveled, lived in NYC (as a professional model) and DC (college for photography and art). My life was once very active, full of friends and creativity.  My life changed forever in 2009 with the diagnoses of Ehlers Danlos Syndrome (hEDS). Ehlers-Danlos Syndrome is a group of rare inherited connective tissue disorders, caused by faulty collagen (a protein in connective tissue). Connective tissue helps support the skin, muscles, ligaments, and organs of the body. There is no cure, only treatment of symptoms. Since 2009 specialist from Hopkins, Christiana Hospital, Jefferson, Greater Baltimore and Univ. of Pennsylvania Hospitals have diagnosed me with POTS (postural orthostatic tachycardia syndrome), Gastroparesis, Chiari 1 (my cerebellum tonsils are herniated causing intracranial pressure and platelet blockage, causing convulsions/seizures, it is kept under control with Plavix and Baby Aspirin), Plexus Nerve Damage, and Mast Cell Activation Disorder (Syndrome). Mast Cell Activation Disorder (Syndrome) is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms. Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological (my family and friends thought I was going crazy a couple of years ago, no it was MCAD) and respiratory problems. I am 30 years old and disabled (I hate that word). I live with my supportive and loving parents. The last 2 years have been really hard. SI Joint Instability, headaches, chronic vomiting, bladder issues, weakness/instability of left leg, a fall in July down 13 stairs causing plexus nerve damage to my left side (and a 19 day hospital stay) In the last 2 years I have spent 94 days in the hospital, had 8 procedures, 1 major surgery, and months of physical therapy AND as I write this I just got out of the hospital after 11 days. I try not to think of my health future but try to live day to day. I have a wonderful puppy named Auggie who gives me great emotional support. My parents are trying to help me prepare for my future. My family has started a GoFundMe page, a Facebook funding page and we have a donation basket at my mom’s restaurant. I still want to be able to LIVE, to live a long life as normal as possible, but I realistically I know what my future entails. I know there are more surgeries, specialist/doctors, hospitals, etc. My family is great and very supportive, but there is only so much they can do. My living and medical expenses are high, to pay my college tuition off, pay off old medical bills, training for my puppy, etc
                       From her parents Mike, Kathy and brother JP….Our once fun loving, social and vibrant daughter/sister is our world. We have never asked or wanted help from others to support our daughter (we have quietly supported her for 10 years on our own). Kacie is one of the most caring, selfless, giving, supportive, compassionate, talented, intelligent, beautiful young woman we know. She HATES when people pity her, or call her disabled and she is a very, very, very private person, she has quietly fought this battle. We have respected her wishes to keep her story quiet until now, she has asked us to make it public and we have started preparing her future (we are in our late 50s). She is hoping to let others out there know they are not alone. This is one of the hardest decisions we have ever had to make, to ask for assistance. She is on disability, but only receives $500 a month (she is on Medicaid, but that only covers some of her doctors, a lot of specialist do not accept it and many of her specialist are out of state, her personal insurance is $348 a month). 2018 her medical and living expenses totaled over $989,609 and in 2019 $402,812.
Please help us give our daughter the life she deserves. She has a lot to live for.
We are asking for $36,901 in donations….
all donations go directly toward her medical, travel, living, past college bills, and future needs.
                                           Please Make a Donation.......“For the Luv of KC” at GoFundMe
                                                                                                               OR
                                mail a check to Kacie Leo, 119 Chesterville Road, Landenberg, PA 19350
                                                                                                               OR
                                    drop off donation at the Chatham Diner, West Grove, PA in the Donation Bucket 
                                                                                  AND PLEASE Share My Story
                                                                                                THANK YOU!!!!