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KathyGillette's Story

Ok, I'm not sure what I'm doing since this is the first time I've found this website, but I have a lot of ground to cover. I am 35, I have type1 diabetes(25 years now), some neuropathy in my feet and hands, as well as autonomic nervous system neuropathy, arthritis, fibromyalgia, migraines, asthma and allergies, and just had a hysterectomy where they took everything but the cervix because of multiple "monthly" problems. My daughter(Kayla), is 12, and has neurofibromatosis type 1(same as her dad) with learning problems(special ed. for math), adhd mainly inattentive type, tumors in her lymph glands, on her chest wall, a plexiform neurofibroma wrapped around all the main arteries of her liver, and one above her left buttock, migraines, asthma and allergies, low weight issues, low immunity and lacks muscle strength despite about 10 years of PT and OT. We are looking for treatments for her NF and are seen at the National Institute of Health in Bethesda, but no studies are open to us in that area at this time. Kayla also sees a specialist in NF at a clinic in Grand Rapids regularly and that's a two hour drive one way for us. My mother is also in a nursing home because of dementia that started to worsen after my father passed away and my mom had a stroke, so I go to see her twice a week which is an hour drive one way also. Right now my daughter is at a camp through the NIH and we will be seeing her doc there on Monday then flying back home and getting ready for school. Basically, right now, I feel like I'm losing the battle with her health. She had Immune system testing with most of her results in the low normal range so the doc's want to stop her monthly IVIG treatment and I know when they do that she will be so sick she won't be able to attend school for most of the year! I have been fighting to get her back on IVIG, but have almost lost all hope and don't know where to go any more. It's like no one wants to listen to me when I know my daughter best and I'm the one that's her and has to watch her be sick, miserable and lonely!!! I'm just looking for some hope and help! Plus money is tight in our home with all of the medical problems and traveling. We do have some state assistance, but it's not quite enough and we don't qualify for anything else. So, right now, that's pretty much my story. Though there's more every day. I know that God doesn't give us any more than we can handle but right now, I'm almost to the breaking point. I would appreciate any help, encouragement, ideas or information anyone can give. Thanks so much. Kathy Gillette