The project we are funding will have a cost of close to $2,000,000 over the next few years. Your contribution will help us achieve this goal by allowing us to engage the top grant application consultants. When an organization is volunteer-run reaching out for help from donors, medical research professionals, and consultants helps avoid unnecessary roadblocks.
On Saturday, June 26, 2021, after struggling to breathe for nearly 30 hours, my Mom "took her big trip" at 11:45 am. That's what she'd say when someone died or when she contemplated her death. As fate would have it, my brother and I were the only family members in the room. Corey was on her right side, holding her hand. I was on her left side, holding her hand. As we sensed the final breath coming, we reached across her body. Still holding her, we embraced each other and sobbed. We stayed like that for several minutes.
Her face became lifeless. Then, almost effortlessly, the tears slowing, the silence turned to laughter and gratitude as we talked about good memories, not-so-good memories, her child-like spirit, and what a fighter she was.
Then… more silence.
More presence. Being. Feeling. Being.
Then… more stories. It was beautiful, hard to witness and experience, wonderful, terrible, liberating, sad, and perfect. Many of you may not know that my Mom suffered from a rare chronic slow-moving, neurodegenerative condition called Superficial Siderosis (SS). There are less than 300 cases worldwide. The condition is caused by iron toxicity in the body created from persistent intermittent internal bleeding that is hard to pinpoint and, at this point, impossible to stop.
From what I understand, the overwhelming amounts of iron in her body would form layers around the brain, brain stem, spinal cord, and optic nerves. Long-term exposure to this "layering" causes hearing loss, imbalance, dizziness, weakness, numbness, and bowel/bladder dysfunction. Unfortunately, there is no cure for SS. At this point, SS cannot be reversed.
For the last 30 years, my Mom has had to live with the fact that the quality of life would never improve; it would only get worse. Slowly but surely. It would get worse. My Mom lost her hearing pretty quickly. She suffered severe falls from the imbalances, which forced her to retire early (hello, financial stress, and social isolation). She endured terrible head injuries (goodbye emotional intelligence and self-control) and several broken bones and lots of pins put in her body. She was eventually confined to a wheelchair with complete loss of her bowel and bladder control (anger seems appropriate here!).
For the last 20 years, her feet and legs were constantly flexed (spasticity) – imagine a 24/7 charlie horse in both legs on all sides. This relentless spasticity caused her legs and feet to become deformed, crippled progressively, and curl inward, the same way your hands would look if you curled them in towards your inner wrists.
And, miraculously, up until the last few years, my Mom still found a way to get to Walgreens each month to get me (and Jen) a Happy New Years Card, then Valentine's Card, next to a St. Paddy's Day card, followed by an Easter Card, then a Birthday card, and within each card that came I would find a single dollar bill or 4 quarters glued to the inside. It was like that all year, every year, for almost my entire life.
My Mom was the toughest of the bunch. It wasn't always pretty, but she never stopped trying, she never stopped loving, and she never lost her playful, child-like heart. She will be missed and forever loved. If you'd like to support me and/or honor my Mom and her life, please consider donating to the Superficial Siderosis Research Alliance (SSRA) in her Memory. SSRA is a registered 503(c)(3), and the money raised in my Mom's memory will go directly to supporting their first clinical trial – a treatment designed to help slow brain cell degeneration.
With love and appreciation, Lori
There is no greater motivating force than the sense of urgency and concern you experience as parents or a family member when someone you love is diagnosed with superficial siderosis. This ultra-rare neurodegenerative disorder affects less than one in one million persons worldwide.
Superficial siderosis entered our lives as a result of head trauma from an auto accident. Our daughter is one of the lucky few to receive a correct diagnosis early on in the progression. Our search for treatment options has now included brain surgery to repair an ongoing bleed to try and slow the degeneration.
While we hope our daughter will have a chance for a healthy life one day, we understand that research is critical to the long-term success of those with this condition. We have experienced first-hand how rare this disorder is and the challenge of finding knowledgeable medical professionals.-Kyle and Sue Dempsey.
Every dollar we receive supports our education, awareness, advocacy, and research programs. In our organization, no one is paid a salary. The Superficial Siderosis Research Alliance is a 100% volunteer-run organization led by family members, patients, and concerned friends.
We believe the voice of our superficial siderosis community is the key to developing patient-centered research. No one will ever understand the priorities of an ultra-rare condition better than those whose lives are affected daily.