I am Dani mom of two girls. PA is 8 years old autistic, ADHD, SPD with major food aversions, Epilepsy, sever food allergies & Hypotonia. My 20-year-old Shann (yes, I feel old now) just finished her fourth semester at BYU Idaho. She also is engaged and going to be married in November. So we are also planning a wedding.
My hubby & I have been married for almost 22 years. My husband is disabled. He had two back surgeries (years ago) and at the first of the year he will have a third. His back was fused, but it did not take. Now they need to go back in and put hardware in and redo the fusion. It will be 14 weeks recovery. We are trying right now to get things ready but we need to be able to sell our small car and buy one that is a little higher off the ground. After the surgery he will no longer be able to drive the car we have. Buying a newer car is going to be an expense we really can’t do without help.
He is in school now getting his BA in IT Media Management. He is my biggest supporter and takes very good care of me. He builds computer systems and loves working with computers, so it was a no brainer. He loves to rebuild old laptops people don’t want anymore to give to students at our daughters college. Kids who can not afford new ones. Last year we were able to do two of them. Old laptops are hard to come by and people don’t like to give them away. It makes it hard for him to be able to do it more. He is very generous and has always given his computer talents away.
I am disabled with stage 4 Neuroendocrine (Carcinoid) Cancer. Currently I have tumors in my pancreas and now kidneys well as chronic pancreatitis. I also have psoriatic arthritis & a medication induced Parkinson’s syndrome (a movement disorder). The past few years have been very hard. I have been through multiple surgeries. Been in and out of the hospital. I spent 6 months on TPN (IV nutrition) and I was on home health care. My husband at that time was amazing and took care of me 24 hours a day, as I could not do very much for myself.
Treatment for this is very expensive because of it being so rare. I have ok medical insurance right now, but my medical provider does not have a carcinoid specialist within the system. I was able to fight my insurance and I got them to send me to Stanford Medical Center where I did see a specialist (for a one time consult). They did find new tumors in my pancreas, which are being watched at this time. I was on a very restrictive diet for a year, but just about two weeks ago I had to have a feeding tube put in. My body decided it could not digest food any longer. I have both a G-tube and a J-tube. They bypass all my insides and the formula goes right into my intestines.
I also just recently found out I have the beginnings of Carcinoid Heart Disease. I have hardening/thickening of the valves and regurgitation/back flow of blood into other parts of the heart. Eventually I will have to have heart valves replaced and my heart will eventually fail. With this on the table so to speak without treatment I have 10 months -2 years.
I don’t like to ask for money, but we need help . I only hope to help cover costs of treatments, for travel to and from treatments as well as any medical expenses I might incur along the way. This is not an easy thing to do. In fact quite humbling as we (my husband and I) have always (up till recently) been able to make ends meet. We have never owned a home, had credit to speak of or owned a new car. We have always had what we needed and been able to put food on the table and provide for our girls. Sometimes people just need a little help.