Lessons from a Yard Sale from a Rare Disease Mom

Recently, we held our first yard sale to raise funds for a cure for GM1 Gangliosidosis.  GM1 is a rare fatal neurological disease.  Tragically, my daughter was diagnosed with it over 2 and half years ago.  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.

At the yard sale, I was struck by two experiences in particular.  In the first case,  I was selling a guitar. I was 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 told her that my daughter is on the cover.  I explained that 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.” She then said “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.  “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 like to believe I’m a minimalist, but over time, we have accumulated stuff as many people do.  I realized I felt uncharacteristically attached to some of the items we put out for sale.

 

The time we prepared for the sale was a bit frenzied.  We gathered items as quickly as possible.  I realized that one of my grandmother’s books was in the sale.  It was a beautiful old book that she liked very much.  I put it into the sale because we have not read it.  It’s been a year since my grandmother’s death, a year since we were given some of her belongings.

 

A woman came up and asked for the price of my grandmother’s book.  I said “$1 or $2 dollars 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 a dollar.”  I said “It would be nice if you would consider the $2 because the sale is for charity.”

 

The woman turned to me and said “Wow!  Anything for a buck, huh?”   I explained that this is for a nonprofit for my daughter and for children who are dying.  I handed her the brochure and she left without the book.

 

In one case, I feel someone was very generous by paying the full price for the guitar.  In the second case, I was taken aback by the “Anything for a buck” comment given the nonprofit sign on the table.  All the funds are donated to medical research.

 

Perhaps this woman was just annoyed because she wanted the book.    I can understand that she might also have been peeved because I said “$1 or $2.”  It was really $2 that I offered while haggling.  In truth, I realized I did not want to sell the book at all due to its sentimental value.

 

As I stood at the yard sale,  we sold odds and ends.   I thought about how much all these material items truly  mean.  I thought about how much the difference between $0, $1 or $2 is in the context of raising funds for medical research.   I am glad that I managed to give this particular woman an informational brochure despite her annoyance.

 

I  believe 100% that children with GM1 Gangliosidosis deserve a chance at LIVING.  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 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.

 

Someday,  I may be the woman who says I have lost a child.

We do not ask for pity .

We do not ask for $1 or even $.01 of people’s hard earned funds lightly.

 

In reply to that blunt comment over $2  versus $1 for a book,  “YES, anything for these children.”   Anything for them.  We will continue to fight for a cure and to fight for awareness.  These children are truly deserving of “a buck” or two and so, so much MORE. They deserve hope and treatment as opposed  to a descent into a vegetative state riddled by seizures until death.

 

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.

profileThe 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 see: www.curegm1.org and www.sweetiris.org for more information.

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