For those living with chronic illness and disability, strong allies and advocates can be vital in the fight to turn sickness into strength. Beth Gore, a patient advocate, mother, and caregiver, knows firsthand the importance of standing up for those you love.
Beth Gore is not only the president of the Oley Foundation (a 20,000 member patient support group for those on home parenteral and enteral nutrition), she is also the mother of six adopted children, all of whom have special needs. I often reflect on what an advocate my mother has been for me in my fight against illness. Beth steps into that same advocacy role for all six of her children every day.
We had a chance to connect with Beth about her relationship with her son, Manny, who lives with muscular dystrophy. Check out a few highlights of our interview with Beth below!
What is one challenge that comes with raising a son with muscular dystrophy?
The “unknown” is the hardest part. Is this the illness that will take him from me? Will I notice the key changes in his health? Have I assembled the right team to support him?. The burden is overwhelming! And the need for perfection is palpable.
What is one thing you with people knew or better understood?
Manny is much more than just a patient. He’s a human being. He has a full life, despite a significant illness/disability. Being seen as a whole person is the thing I strive for most, especially by the medical community.
What is one of the most joyful parts of raising a son with muscular dystrophy?
Manny is a hoot! He has never met a stranger. He finds joy in every day life. Even while being subjected to painful or boring or scary procedures he will commonly say, “This is the best day of my life.” or “I love my life.” That perspective changes everything.
Thank you, Beth, for sharing your story and speaking with us about your relationship with Manny!
Have you had a parent or caregiver in your life who has stepped up like Beth has for her children? Tell us about them in the Friends in the Fight Facebook Group!