Help support Scott in his fight against ALS

Hi all, my name is Tricia Murphy, and I am organizing this on behalf of my kind, courageous, and loving father, Scott Murphy. I grew up wanting for nothing, my parents have always done absolutely everything they could to provide for both me and my older siblings. I am organizing this in an effort to give back just a fraction of what they’ve given to, not only their children, but to all of those around them.

In March of 2023 my dad noticed that something was feeling off in his breathing and when he tried to speak so they made a trip to the emergency room, worried it could be serious. This visit evolved into several appointments with different doctors, but no medical intervention seemed to help. Come April, his speech had continued to decline and he was beginning to feel a weakness in his arms. My parents continued to seek answers, test after test, scan after scan and still no one had an answer. In the beginning of July, he got into Lahey Clinic for an Electromyography (EMG) to test his muscle response and the results seemed to indicate an ALS diagnosis but it was not confirmed, so they sought to rule out other possibilities. He was treated for Lyme Disease, transitioned to a gluten-free diet to rule out Celiac disease, and still no improvements were felt. In October they were able to get my dad into Mass General for a thorough examination and testing, and an ALS (Amyotrophic Lateral Sclerosis) diagnosis was confirmed.

You may be more familiar with it being called Lou Gehrig’s disease, or if you know of Pete Frates and the Ice Bucket Challenge fundraiser, this is the same condition. Heartbreakingly, for my dad and all of us who love him, there is no cure and the life expectancy after diagnosis is just 2-5 years. Everyone’s experience of this awful disease varies, which is why diagnosis is often challenging, but for my dad, he’s suffering from slurred speech, muscle weakness, trouble walking, difficulty swallowing, and heightened emotions. If you’re lucky enough to know my dad you know, moving around is something he’s known for – whether he’s running up and down ladders doing wallpaper jobs across all of New England, building or repairing something for someone he loves, doing flips on a wakeboard, jumps on a dirt bike, or just playing around with his kids and now grandchildren – so, while this is devastating for everyone who goes through it, you might imagine how frustrating and sad it has been for him as the disease has progressed.

My dad sees several doctors on a weekly basis and is on a few medications that help to ease the symptoms, but none will help stop progression or cure the disease. Throughout this year as they’ve tried to find answers and relief, his acupuncturist has been a true blessing. Through her research and recommendations, we found an alternative treatment option, that is still in clinical trials but has shown positive results. Earlier this month, my parents traveled to a facility in Mexico for the first of four procedures associated with this treatment. They intend to return three more times over the next few months to complete the treatment process. We are so incredibly hopeful for some relief and possible regression in symptoms.

Since this started, my parents have been a wonder to watch. They continue to live every day with an optimism, hope, and strength that is truly inspiring. While we have been fortunate to access all the care we have thus far, the cost of medical treatment for ALS is insurmountable, even with insurance. On top of the daunting costs, my dad has been unable to work since July, and my mom has taken on the role of sole provider and caretaker, while balancing her full-time job, plus everything else she does for those around her. At present, my dad requires walking sticks to get around and uses communication aids when his speech fails him. In addition to the continued medical expenses, they will soon need a lift installed outside so he can get in and out of the house, and will need the bathroom redone for accessibility.

If you know my parents you know, they are two of the most selfless, compassionate, and loving people around, and you also might know that they are private and proud individuals that do not like asking for help, so I’m asking on their behalf. If you’ve read this far, I want to sincerely thank you for taking time out of your day I know now, more than ever, that time is precious.

We are immensely grateful for support in all forms: kind words, sharing, and donations, no matter how small – we could never thank you enough. This year has been so challenging but it’s always the love of our friends, family, and community that get us through. Wishing you all happy holidays, full of love. Thank you again!

p.s. We hope to plan a fundraising event in 2024 and will keep you posted.