Paisley is a sweet 2 year old ball of sunshine, and the youngest of her siblings Payson (twin), Everly and Dawson . Her medical journey began back in early December when her parents noticed that she was struggling with walking and losing her balance. Every week that went by it progressed and reached a point where she couldn’t walk at all without constantly falling and getting hurt. She started having speech problems and couldn’t even participate in regular daily activities. Alex and Kyle decided after 3 weeks of Paisley regressing with her development that they needed to get a second opinion. They made an appointment with a pediatrician through Phoenix Children’s Tempe Clinic. The pediatrician was very concerned about Paisley’s regression and worsening neurological symptoms so she sent them to the ER at Phoenix Children’s Hospital to get imaging of her brain done. Once there Drs made the call to admit her and continue doing a full neurological work up and did several MRI’s as well as a spinal tap.

Paisley was admitted at Phoenix Children’s Hospital for 2 weeks (January 16-January 28) where they did 2 fast brain MRIs, conducted a spinal tap and did multiple sedated MRIs for her brain, spine, chest, abdomen and pelvis in search of a tumor. She has multiple EEGs done to monitor for seizure activity due to her increasing tremors and muscle jerks. She suffered a cardiac episode during one of her treatments and had to have an EKG and heart echo done and was transferred to the cardiac floor of the hospital to remain on a specialized heart monitor for the rest of her stay. Paisley also began Physical Therapy every day while in the hospital and is scheduled to continue with Physical Therapy, Occupational Therapy and Speech Therapy after discharge.

After all the testing, Drs stated her possible diagnosis as Autoimmune encephalitis, paraneoplastic syndrome and confirmed she has OMAS (opsoclonus myoclonus ataxia syndrome). They did multiple forms of treatment including 3 days of corticosteroids, 4 days of IVIG (intravenous immunoglobulin) and did her first dose of Rituximab for immunotherapy which was done as an 8 hour infusion. After all of her treatments, Paisley was still displaying her neurological symptoms and still struggling with walking but had shown some improvement. Drs decided it was best to send her home to have a break from the hospital and see if her symptoms improved or worsened at home.

The first few days back at home Paisley seemed to improve, she went back to eating regularly, was walking and playing and seemed to be in a better mood overall. She still displayed her neurological symptoms and still struggled with balance and her gait while walking but otherwise seemed improved. However, after about a week Paisley began to display signs of being sick (congestion, cough and low grade fever). She also seemed to regress once again with certain symptoms. Since she was currently immunocompromised due to her Immunotherapy treatment, Kyle and Alex took her into the ER at Phoenix Children’s Hospital as instructed by drs to be safe. The Drs diagnosed Paisley with Bronchiolitis from RSV but were concerned about keeping her in the hospital and possibly catching more infections so they sent her home in hopes of being able to manage her symptoms at home. Drs decided to schedule Paisley for a second dose of Rituximab due to her regression and had Kyle and Alex set up an appointment with the Oncology department at PCH Arrowhead Campus for Thursday, February 13 for her infusion.

On February 9, Kyle and Alex noticed that Paisley seemed to be going worse. She hadn’t slept at all and was continuing to complain of severe pain. She refused to eat and was having trouble swallowing, she was shaking with intense pain and started having high fevers that wouldn’t improve. She wasn’t able to walk again and was inconsolable. Paisley then broke out with a horrible rash that spread all over her body and her pain worsened. Kyle and Alex were advised by Drs to once again bring Paisley into the ER at PCH so they took her to the Arrowhead campus where her treatment was scheduled for later that week. Once there, her symptoms continued to worsen and her overall health took a drastic turn. Nothing seemed to help with her pain, her rash intensified and was everywhere. Her neurological symptoms were increased and was having continuous body jerks and tremors. She then began having severe eye pain/discomfort and was having unusual eye movements. Paisley had an extensive blood work-up done and it was determined that she needed to be admitted once again. Drs had her transferred via ambulance to the main campus Phoenix Children’s Hospital in order to be with the specialists for her condition.

As of right now Paisley is still admitted at PCH and undergoing more treatment and having more testing and imaging done. Kyle and Alex have already begun receiving medical bills from everything and they are quickly adding up on top of expenses for traveling between Prescott Valley and Phoenix constantly, food expenses while stuck in the hospital and all of their usual expenses and monthly bills. Due to the constant hospital stays and Dr visits, and Paisley being immunocompromised and unable to attend any sort of daycare, Alex has had to stop working for the time-being and Kyle is currently having to take leave from work unpaid. This entire journey has been very stressful for them not only as a family but financially as well. Their family is very close and the constant separation between them from hospital stays has been very difficult on top of the fear and stress with Paisley’s current diagnosis and the wait of learning the rest of her diagnosis. They have been so grateful for any help that has already been given for their sweet Paisley. We ask if anyone is able to help contribute to their family in anyway we’d greatly appreciate it, any donation of any kind is appreciated and extremely helpful for them as they navigate through this difficult journey.