Mara’s MAYHEM fund.

This is our daughter, Mara. She’s a thriving 14-year-old with Cerebral Palsy and epilepsy. She gets around by driving a power wheelchair with her head, and has a computerized speech device that she can operate with her eyes. She loves doing anything adventurous and accessible. Some of her favorite activities have included adaptive downhill skiing, indoor skydiving, power soccer and riding her adaptive tandem bicycle with us. She’s always had an independent streak that we’ve tried our hardest to nurture and also teach her to use that to self-advocate for her needs. She has expressed a goal of advocating for others in the disability community as well when she grows up. So far we’ve been really pleased to be able to give her a wonderful variety of opportunities and everything she needs to achieve her goals in terms of medical care and equipment, her education, environmental modifications, day-to-day care, and adventures. This fall, she is in the process of getting a service dog and is going to participate in the Youth In Government Conference in January. But despite all the good, it's been a tough year—especially this past summer and fall. In July, Mara had a deep brain stimulator implanted. This is a device that basically is a pacemaker to her motor center through wires into the frontal lobes of her brain. Her goal was to reduce extra unwanted movements and hopefully gain some additional motor function. Unfortunately, she suffered rare complications during the surgery, including additional swelling and a small stroke in the left side of her brain. While she has recovered many of the physical skills that were affected by these complications, she still has a lot of work ahead of her and the challenges from it continue to require a great deal of energy and resources. She has been aggressively working with both physical and occupational therapists to try and regain the baseline motor skills on the right side of her body. In late September, she spent an additional week in the hospital with non-epileptic episodes that appear to be result of this summer’s stress.   As she came home from that hospitalization at the end of September, we embarked on a house remodel with the goal of giving Mara additional independence at home. This project has been in the planning stages for nearly five years, so it’s exciting to have it finally underway. Some features include adding an automatic opener and new front door, redoing the accessible main bathroom to fix design issues in the shower and add a overhead track system to help with transfers. (We do currently have a rented hoyer lift to assist us, but we’re the only two that can transfer her safely and quickly at the moment).   Within 48 hours of the project start, we ran into multiple major issues. The bathroom subfloor had rot from the design issues we were already fixing, there were crossbeams that precluded the overhead track lift in the bathroom, and, most importantly, the contractors found asbestos-type insulation in the eaves of the house. After three weeks of additional planning, we are finally moving forward with the project with some significant cost increases.   So here’s where we are.  The good:  A large proportion of Mara’s costs are covered. We are fortunate to have good health insurance as well as Medical Assistance for her, a great county- and community-based waiver program to work with, and no fewer than three top pediatric hospitals within 90 minutes of our house. The county is covering the original project scope and should soon be letting us know what they can do about the updates. While making a major impact on everyone’s time and energy, Mara’s stroke recovery is progressing really well. The Deep Brain Stimulator is also helping quiet her extra movements quite a bit.   The not so good:  Resources are getting tight and some big bills are coming up. We will need to pay for parts of the remodel out of pocket. We hope to put in a fence to increase Mara’s ability to care for her new dog herself. We want to continue being able to keep one of us at home so she has access to help 24x7 when needed. We have other bills that aren’t getting paid while we focus all of our energy on getting Mara the intense level of care she needs. We hate asking for help. We quite frankly suck at it. Along the way, people have offered, suggested, and given it freely even when we haven’t even been able to clearly ask for it. Thank you. It has meant everything to us. This time we’re asking loud and clear. Please help if you can. Even sharing the link for this, or reaching out with other ideas, is useful right now. We will get through this, and appreciate everyone’s consideration of this, and your continued support, in whatever form you are able to offer. Thank You Kathie and Paul