Help Juliette Find Answers and Healing

Hello, thank you very much for your interest in my grandaughter, Juliette. She is suffering from a neurological illness that her doctors haven't been able to diagnose, despite months of tests and multiple hospitalizations. It's difficult to ask for help. My daughter, Molly and her husband, Jose have been holding out for months, hoping they could work things out, but they’re sinking. We live in Highlands Ranch, Colorado with their four kids. Their third child, 13-year-old Juliette, started having neurological symptoms in April. She first noticed the left side of her tongue go numb after eating a piece of candy. She thought that the candy had somehow caused it, but within days the numbness spread to the inside of her cheek, then to the outside. At that point, her mom took her to their pediatrician who advised them to go to Children’s Hospital Colorado if the numbness spread any further. A few days later on April 14th it did, and they went to urgent care. Juliette's initial neurological exam went well. She was released and they were told to make an outpatient appointment for an MRI. They got in at the Children’s in Colorado Springs on Wednesday, May 1. Afterwards, they went out to one of Juliette's favorite restaurants. Molly got a call from their pediatrician’s office while they were eating to tell her there was evidence of a demyelinating/inflammatory process on the MRI, and she should make a follow up appointment at Children’s. She told me later that looking into Juliette's eyes as she listened to that news was one of the hardest things she's ever done. She tried to keep quiet while she cried on the way home so Juliette wouldn’t hear. Juliette noticed anyway, so her mom lied about having a headache.

The next morning, they went to the pediatrician for what they thought was tennis elbow. Juliette and her younger sister had been playing with their rackets in the cul-de-sac every afternoon that week, and Juliette mentioned that her elbow hurt. The doctor, thankfully, knew better and sent them back to the Children’s ER. Juliette had more MRIs, a CT scan, a lumbar puncture, and a barrage of blood tests. The MRIs showed the same lesions in and around her brainstem as the one the previous day, but all the other tests were oddly normal which made it impossible for the doctors to diagnose her. Juliette has been in and out of the hospital since that first week in May. Some months, she and her mom are there more than they’re home. Numbness and/or pain comes and goes, mostly over the right side of Juliette's body. She struggles with balance issues and weakness that sometimes make it difficult for her to walk. Her ears ring, and at one point she lost the left half of her vision in both eyes. The doctors have repeated all the original tests with some additions, but all with similar results. She’s undergone several rounds of plasmapheresis in an attempt to rid her body of any antibodies that might be attacking her brain, IV steroids, and IVIG, all with very limited success. She got aseptic meningitis as a result of an IVIG treatment in July. She’s had central lines surgically placed for the plasmapheresis, the latest at the beginning of this month. She was thrilled that she was able to get a tunneled central catheter that would allow her to get outpatient plasmapheresis and be able to attend her first day of eighth grade on August 7th, as opposed to the external lines that stuck three inches out of her neck like she'd had before. Unfortunately, on the afternoon of the 6th she felt like she had displaced that line. It turned out that the line was fine, it was her blood pressure that was plummeting. It was 55/32 when they got to triage, and her temperature was 95 degrees. She spent that night in the PICU and missed her first day of school. The doctors were concerned that the line had gotten infected and she had sepsis. Nothing cultured out of her blood, though, so they don’t have an explanation for that episode either. Juliette is currently in the hospital because last week, the entire right half of her body went numb overnight. The MRI they did on Friday showed new lesions. Juliette says it feels like there’s a thick layer of plastic over her skin, and she’s been losing strength and coordination. Writing has gotten difficult for her. The neurologists requested a biopsy of her brain that the neurosurgeons declined because the lesions are too deep to access safely. So it’s more IVIG and steroids, and then they'll come home for a while.

One of Juliette’s few comforts in the hospital has been her siblings’ visits. It’s amazing to hear her laugh when they’re there, and heartbreaking to see her cry when they leave. In summer they could spend most days with her, but now they’re in school and she can only see them on the weekends.

Her parents have started researching other hospitals around the country specializing in pediatric neurology. The doctors at Children’s Hospital Colorado have been wonderful, but we think it may be time to get some additional opinions. Her symptoms have been getting more frequent and wider-spread. We’re terrified of how many of them will be permanent, and what new ones will develop before she gets a diagnosis and an effective treatment plan.

Jose and Molly run a small family fencing business; Molly advertises and finds projects, and Jose installs the fences. Summer is their peak season. In past years the whole family has pitched in. This year Molly has been preoccupied with Juliette’s hospitalizations (she hasn't left Juliette's side), appointments and care. Jose has worked every day, either installing or repairing fences, or looking for work, and spends every night in the hospital. Unfortunately, it's been an unusually slow summer. He's only been able to find a few small jobs. He’s been doing everything he can to keep us afloat, but in addition to working while trying to find projects, he’s worried sick about his little girl. The overwhelming fear and anxiety of her condition, the unanswered questions surrounding it and her future, is compounded by the stress of unpaid bills, panic at the possibility of losing our house, and our car’s mounting mechanical issues. I help as much as a I can, but I'm on an extremely limited fixed income and I rely on them. We’re unspeakably grateful that all Juliette’s medical treatments are covered, but we’re drowning in the associated costs.

I’ve really hesitated to reach out for help because I know that it’s tough for everyone out there, but they’re at the end of their rope, emotionally and financially. If you have a little to spare, I can’t tell you how appreciated it would be. Again, thank you for taking the time to read all of this!