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Support for Olivia & Family

Windsor, VT

Story

On the morning of December 9th, shortly after waking up in a normal way, feeling completely fine, Olivia began to feel some pain and weakness in both of her thighs that quickly (within seconds) descended to her lower legs. Fast forward to about 2:30pm, she was paralyzed from her waist down and being brought to DHMC by ambulance. The teams at DHMC concluded their treatment with a working diagnosis of Guillaine-Barre Syndrome (GBS), despite my concerns of that not being the correct diagnosis. On December 23rd, Olivia was transferred by ambulance to Spaulding Rehabilitation Hospital in Boston, MA to begin intensive physical and occupational therapy. Because of Olivia’s severe and atypical symptoms, Spaulding took it upon themselves to reach out to different neurology teams at nearby/affiliated hospitals. On December 27th, Olivia was transferred to Boston Children’s Hospital. BCH has since discovered that Olivia does not have GBS. There are findings of significant spinal cord damage which indicates either a myelitis of sorts OR a spinal cord stroke. To date, between DHMC and BCH, Olivia has undergone a head CT, 2 lengthy MRIs, 2 lumbar punctures, bladder/renal scans, a plethora of blood tests, IVIG treatment, and more. The stroke team is being brought on for further consultation. BCH will begin administering some treatments while they continue testing. More treatments are being discussed as other findings surface. Olivia is still paralyzed from the waist down with no improvement. She has no ability to move her legs or feet and continues to have no control of her bladder or bowels. We do not know if Olivia will walk again. If she does show signs of improvement in the next 6 months to 2 years, she will most likely have significant lifelong deficits. We are hoping to return to Spaulding Rehab in Boston once our time here at Children’s is finished. We have no idea on a timeline but Olivia and I will be in Boston for quite a while. Olivia and our family have a very long road ahead. Olivia is doing well emotionally. She remains in good spirits with strong motivation to heal, while trying to grasp the intricacies of it all as an 11 year old child. Suki (and Haiden) and Alex are doing well, especially with the support from my sister and family. I will be contacting Alex’s support service agency once school resumes to see what else they can provide for him during this time. I have been staying by Olivia’s side since day one and will continue to stay here in her hospital rooms for the duration. We make a pretty good team. With that said, suitcase- and hospital-living in Boston is our new normal for the unforeseeable future. My small business is mostly on hold. I miss my other 2 kids and grandson terribly, while being incredibly proud of them for stepping up through their own difficulties. Basically, I have some pretty badass kids. I am taking everything as it comes and trying to stay in the present. Nothing is in my control. It never was. I am taking the action steps I can and trying to let go of the rest. I’m grateful that we are at Boston Children’s and that Spaulding took the initiative to reach out to them of their own accord, or a lot would have continued to be missed. I keep saying it because I truly mean it: I am most grateful for my kids, my family, my friends, my communities, my God, and the work I have put into my own healing journey so far so that I am able to “show up” as fully as I can today for the people and things that matter most. You all are helping to carry us and for that I can’t thank you enough. Much love from the Ayres-Allens 🙏🏼 ❤️


Special Notes

This will be the place to come to see what the family needs for help. We will update needs regularly, while keeping Olivia’s health updates on FB. The family isn’t sure what types of things they will need yet, but you can expect to see requests for meals, gift cards, and wishlists for things that Olivia may need or want that isn’t covered by insurance (e.g., adaptive clothing, bedding, personal care items, wheelchair accessories). Feel free to share this page with anyone you think might be interested in helping or following. ❤️

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