What Every Dollar Means at Our Rare Disease Yard Sale
Recently, we held our first yard sale to raise funds for a cure for GM1 gangliosidosis, a rare, fatal neurological disease. Tragically, my daughter was diagnosed with it over two and a half years ago.
At the yard sale, I was struck by two experiences in particular. In the first case, I was selling a guitar and thinking out loud when a woman asked for the price. I said, “Well, it was originally $100. It does have a broken string, but it is also for charity.” In the back of my mind, I had not settled on a price, but I definitely did not expect $100.
I handed the woman a brochure and showed her my daughter on the cover. I explained our nonprofit is for children suffering from a rare fatal brain disease. She looked at the brochure and said, “I am so sorry. I will give you $100 dollars. Some children are with us for a shorter time.” She walked away. A few minutes later, she came back. She looked at me and said, “I lost both my children.”
I wanted to ask more about her children, but I also did not want to ask too many questions having only just met her. I am very grateful for her generosity. I thought about how death is a part of life. So many of us have been affected by extremely painful experiences, yet these experiences are often kept private. Those experiences do not always rise to the surface in our more mundane interactions. I realized, someday, I may be the woman who says I have lost a child. “You probably know what we are going through then,” I replied. She nodded silently. It was a fleeting moment of mutual understanding.
The second experience took me by surprise in a different way. I realized one of my grandmother’s books was in the sale. A woman came up and asked for the price of my grandmother’s book. I said, “$1 or $2 would be nice.” Then, I realized that I really should not have put the book out for sale due to its sentimental value. She said “I will give you $1.” I responded, “It would be nice if you would consider $2, because the sale is for charity.”
The woman turned to me and said, “Wow! Anything for a buck, huh?” I explained that the funds are donated to a nonprofit to support medical research for my daughter and for children who are dying. I handed her the brochure and she left without the book.
In reply to that blunt comment over $2 versus $1 for a book, “Yes, anything for these children.” Anything for them. We do not ask for pity. We do not ask for $1 or even one cent of people’s hard earned funds lightly.
We will continue to fight for a cure and to fight for awareness. These children are truly deserving of every dollar and so, so much more. Children with GM1 gangliosidosis deserve a chance at living. They deserve hope and treatment as opposed to a descent into a vegetative state riddled by seizures until death. I try my best to live each day with as much hope as possible. The reality is that the deck is not stacked in our favor. This is a rare, degenerative disease. As time passes, regressions advance. Some of the changes and experiences are very hard to accept. Generations of children have been suffering from this disease for over 130 years which is far, far too long.
Thank you to the sweet woman who bought the guitar, and for that very vulnerable admission at a yard sale.
Thank you to all our friends and supporters who have been so very generous.
Every contribution helps and it’s important to get the word out. We continue to encourage others to join the fight to save our daughter’s life and to save the lives of all those affected by this condition.
The author of this post Christine Waggoner founded the Cure GM1 Foundation in April 2015 in honor of her daughter Iris and all the children who suffer from GM1 Gangliosidosis. To make a donation to support GM1 medical research, please visit the Cure GM1 Foundation page and Sweet Iris for more information.
Follow this journey on Sweet Iris.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.