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Mark’s Story

Site created on September 17, 2023

Welcome to our Caring Bridge for Mark. Mark was recently diagnosed with Huntington’s Disease. This is a devastation blow to our family. If you are unfamiliar with Huntington’s Disease, it is a terminal, progressive neurological disease that affects cognition, movement, and every other neurological function. HD steals a person’s ability to walk, talk, care for themselves, emotionally regulate and more. For the last several years he has been experiencing symptoms that we couldn’t quite figure out. Including worsening cognitive issues that began to affect his ability to work. This has caused struggles over the last several years making it difficult to stay afloat financially, especially while dealing with my (Billie) disability as well. He lost his most recent job due to these issues, shortly before receiving his diagnosis. Because of this; he is without health insurance currently. Because of the severity of the disease and it being terminal; it is an automatic qualifier for disability. Once that is secured he will receive medical coverage, though it will not cover everything. For now, he is need of doctor’s visits, medications, and general support while we navigate moving forward. He will also soon need mobility aids, home health, etc. We have 6 children, who will also need support. This disease is a genetic inherited disorder and this unfortunately means that our children each have a 50% chance of having the disease. They are planning to be tested. Our doctor believes Mark’s onset to be mid-forties, and the estimation from onset to final stage/passing is 15 years. Mark turned 55 yesterday. We have found an incredible neurologist who specializes in HD at Mayo Clinic, and our first goal is to raise the funds to get Mark there. Our hope is to find a clinical trial or perhaps new treatment to prolong his life. As of right now, there is not a cure or any treatment other than treating individual symptoms. Our community has been there for us in the past, and we are so grateful, but we are asking for your support again. We won’t be able to do this without you. 💖 Donations: Cashapp: $billiekwedd Venmo: billiewedd@gmail.com Zelle: billiewedd@gmail.com

Newest Update

Journal entry by Billie Weddington — Nov 21, 2023

📣📍We made it to Portland!

🌲 Mark had his first full day at his new job- which he loves, and will be a much better fit while we navigate his medical needs. The kids and I spent some time wandering about a bit, they’re absolutely enamored with all of the beautiful scenery and the fresh air!

We know we are absolutely in the right place 💖

We have a couple of weeks to get through that will be a little unsteady while we get back on our feet.

🏠 🥗 Our immediate needs relate to lodging while we house-hunt (though we are very grateful to extended family for help in this area, we will have some additional lodging needs), food, gas for transportation to Mark’s office/doctor’s appointments/etc, and medical co-pays while we get established with new providers here. We would be incredibly grateful for any help offered. We are working hard to be entirely self sufficient, and are confident we are very close to that! We just have a bit more to go 💪🏼

➡️ Donations can be made through: Venmo: @billiewedd Zelle: 817-914-4218/billiewedd@gmail.com ; CashApp: $billiekwedd or here.

Read More of the journal titled "November 5, 2023"

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