3/17/26 - Next month Genevieve Ann has 3 appointments that we have to travel to NYC for. We can't see anyone locally, they're not familiar with her condition. It's her 1 year checkup with the Neurosurgeon for her surgeries. She was in the ER earlier this month, her shunt and her head was throbbing and she was throwing up. If you could help with additional travel costs, rental car, hotel (2 of her appointments are 2 days in a row) that would be greatly appreciated! Thank you!
Easter Hospital Stay Day 5 - 1st Day post-op - She's doing ok today. She doesn't seem to have fluid/pressure in her head. We are hopeful and praying! If anyone can help with expenses, we appreciate it. It is expensive, coming to NYC, but we had to come here to get the care Genevieve Ann needed! Thank you!
#GenasJourney #chiarimalformation #ChiariMalformationAwareness #chiariwarrior #chiaristrong #kickchiari
4/22 - Easter Hospital Stay Day 3 - Surgery is scheduled for tomorrow at 2pm, this will be her 4th surgery for Chiari Malformations. They're going to tighten up skin, muscles and EVERYTHING else that was stretched out from the CSF leak. This will lead to less room for fluid, so there won't be so much pressure in her head. The pain she has from the pressure is horrible. To EVERYONE thank you for the prays and financial support. The economy is so bad and I APPRECIATE every penny EVERYONE has donated. We are using it to get back and forth to NYC to get Genevieve Ann the care she needs. If you can please share...if anyone can donate. We have more trips to make. Hoping and praying this goes GREAT!
#GenasJourney #chiarimalformation #ChiariMalformationAwareness #chiariwarrior #chiaristrong #kickchiari
4/19...tomorrow will be our 3rd trip in 1 month. Hoping 3rd time is the charm and they fix the LEAK for good. Looking forward to planting our garden and playing with the puppies this summer! She is such a sweetheart and has such a good attitude! #GenasJourney #chiarimalformation #ChiariMalformationAwareness #chiariwarrior #chiaristrong #kickchiari
3/18 UPDATE Genevieve will be in the hospital for at least another week. She still has alot of pressure in her head, her intercranial pressure is 30 and 10 is normal. They're put a drain in today and she will most likely have another surgery to put a shunt in later this week or early next week. If you can help please do...and share. Thank you all for the love, support and prayers!!! #GenasJourney #chiarimalformation #ChiariMalformationAwareness #chiariwarrior #chiaristrong
Genevieve Weeks is a 20-year-old young lady who had Chiari Malformation type 1 decompression surgery on August 9th, 2024. Her first surgery was a type 1, but now it has worsened to a type 1.5. Since then, she has been significantly worse, with migraines all day, every day, and pressure in her head. Her quality of life is not enjoyable. Most young adults her age are in college or furthering their careers. Genevieve is not able to do so. She has to be in a dark, quiet place most of the time because she's sensitive to light, noise, and people.
For 6 months, we didn't know what was going on; she wasn't getting any better. As a mother, one of the worst things in life is to watch your children in pain every day, all day, with no way to help them, with no way to make it better. She has been suffering. We found out that for 6 months she has had a cerebrospinal fluid leak. I've talked to someone who had a cerebrospinal fluid leak for just 24 hours after having surgery, and she said it's the worst pain she's been in during her lifetime!
We consulted a Chiari Malformation specialist in New York City, and both Genevieve and I feel the most comfortable with him doing her second surgery. She is also missing bone that is protecting her cerebellum in the back of her skull; she needs a customized plate in her head. She is having a Suboccipital decompression, C1 Laminectomy with autologous duraplasty, CSF leak repair, and custom cranioplasty surgery on March 12th, the day after her 21st birthday. This will cost a lot of money between food, gas, hotels, and rental cars. Anything you can donate helps, even if it's just five dollars. Sharing also goes a long way, thank you. Genevieve is a kind, caring, loving young woman, and she deserves to be able to live her life to the fullest. She deserves to be able to have the experiences I had at her age. It's not fair to her. With this surgery, we are hopeful her quality of life will improve. She has a facebook group called Genevieve's Journey if you'd like to follow along!
#chiarimalformation #chiaristrong #Genevieve's Journey