Monthly Goal:
USD $3,500
Total Raised:
USD $250
Raised this month:
USD $0
Campaign funds will be received by Kathleen Fairchild
After 2 years of being a full time caregiver to my daughter, finances have been exhausted and while I am working on hopefully getting more help to care for her, in the immediate, I am her only source for full time caregiving.
My daughter, Tori, has been diagnosed with a couple of rare conditions. One is Ehlers-Danlos syndrome, and the other is POLG-related Mitochondrial Disorder. The combination has had us seeing specialists such as Neurology, GI, Geneticist, Psychiatrist, Endocrinologist, DO, Urogynecologist, and OBGYN. Due to the excruciating pain she is in daily whenever she tries to stand or move, I am needed to help her to the bathroom, help her with all her hygienic needs, and help get her food. I also deal with her understandable anxiety due to her condition as she also has been diagnosed with high functioning autism.
I have been unable to find more than very minimal part time work as an online piano coach at home, due to her needs for going to the bathroom which vary each day. Due to the fact that we have general diagnosis's, we are still seeking a more specific diagnosis for what is causing the pain in her left pelvic region that has her in severe chronic pain. There are thoughts that it could be a cyst leaning on a nerve, or pelvic floor dysfunction which is very common in Ehlers- Danlos syndrome. GI threw hands up in the air and has called it visceral hypersensitivity related to Ehlers-Danlos, but that is very non-specfic. For several months, we were delayed in getting back with GI and seeing a surgeon as there were issues with our insurance, and they originally thought Tori had SMAS (superior mesenteric artery syndrome) due to a CT she had in December last year. Once we finally got to the follow up appointments that were pushed back several months, we were told that subsequent imaging did not show SMAS and it was ruled out. While relieved as that condition would have likely meant surgery, we still are searching for someone to tell us precisely why she is in such excruciating pain daily. General Surgeon noted a cyst-like mass adjacent to her uterus on scans that he referred her to OBGYN for, and she additionally has prolactinemia as well as proteins spilling over her kidneys, (though not spiking.) She also has a 4mm cyst that was showing on a recent thyroid/parathyroid ultrasound that we will get details about at a follow-up appointment end of November.
The most challenging issue has been getting doctors appointments in a timely manner. I don't know what it is like in other states, or even other areas in our state. But getting in for first time appointments with specialists generally books out at least 3 months, and for follow-up appointments, 6 weeks or more. This has made it incredibly slow at getting official diagnosis's and one of the reasons why we have yet to get confirmation of exactly what is causing the significant chronic pain she has. Additionally, most doctors know very little about Ehlers Danlos Syndrome or the management of the condition.
Your donations will make such a difference as we continue this journey. Between rent ($1800/month), Utilities ($750/mo) and food, gas and dry goods($750/mo) $3300 just meets our needs, but leaves nothing extra.
Thank you for considering to help me as I help my daughter! Our hope is that the specific thing causing her severe pain will be determined so that we can proceed with meaningful pain management and physical therapy to get her back on her feet.
January 12th, 2025
The New Year has ushered in fresh encouragement, reconnection with friends and family, and I have been dealing with better health than I was there for a while. I have been impressed to pray daily in the spirit for my daughter as she continues to regress and deal with severe pain.
While we wait for important appointments with her PCP and nephrology in February, we are completing more labs this month. So far, her current labs point to kidney dysfunction, disease or failure. Many of her existing diagnosis's could have contributed. But that will be addressed after we know more precise information we should receive from nephrology end of February.
Meanwhile, I am also working on certification courses to be a freelance proofreader/copyeditor, as this is something I could manage, as an income-bearing job around her tenuous schedule. I am also marketing for just a couple more online piano students as well. However, my monthly needs still have as of yet to be met consistently, and I so appreciate your donations if God lays it on your heart to give.
I will be updating more as we receive results from labs completed this month and when we move into February with appointment updates. Your prayers, that the truth of her condition will be established, and that her pain would subside, are coveted.
Hebrews 10:25 (The Voice) May we encourage "each other, especially as the day of His return approaches."
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