Stories

Since learning about the diagnosis of our boys we have gained much strength by reading stories and talking with people who have or are going through similar experiences.

Available Stories


If you would like your story to appear on this page, email your story and any pictures you would like to include to GM123.org@gmail.com.


Join Us on Facebook

If you or someone you know suffers from a gangliosidosis disorder please reach out to the private facebook group found here: The Facebook Gangliosidosis Group. You will need to request access but it has been a great resource for us.

Videos

Run 4 Rare

Day 21- March 20th, 2015Learn more and help Iris athttp://www.sweetiris.org GM1- Gangliosidosis - a rare degenerative and neurological disease affecting children30+ miles, Fredericksburg-Unionville, VA area for sweet Iris and the Dooley family from California- "Iris is a strong and sweet girl. She wrangles with her little brother Carter on a regular basis, as any big sister should. She has a beautiful smile and a contagious giggle. She loves orcas, dolphins and a good laugh.In August 2013, our family experienced every parent’s worst nightmare. Iris was diagnosed with a terminal degenerative neurological condition called Juvenile GM1 Gangliosidosis. We were completely blindsided. We had been told that Iris’ development was normal, despite troubles with speech and her motor skills. This school year, there is now evidence that the disease impacts her learning.The only suggested medicine that exists may possibly slow the disease, if that. It is not even FDA-approved for this specific disease. Many people have tried the medication with limited success or they experienced no benefit at all. There are no treatments for this condition other than comfort measures and symptom management.GM1 is progressive. The disease worsens with time. We do not know what the future holds. We hope Iris will live many more years, perhaps into her teens or even her twenties. But we do not know how her quality of life will be maintained. If there were a choice between quantity or quality, what would one choose? We know the inevitable course this disease takes. There are no guarantees. We cherish every moment and we take nothing for granted.Each day is a new beginning. We are hopeful that somehow we can contribute to a cure. However, we are fighting in a race against time.This disease is not specific to any race, ethnicity or individual group. We are a typical family with a very grave concern. We have an enormous amount of love for our sweet girl. " - The Dooley Family from California

Posted by Noah Coughlan on Friday, March 20, 2015

Charlie's Story

Todos con Maite

The Monster in the House - Kat and Morgan

This is hope for a breakthrough. THIS IS AUBURN RESEARCH

Aaron's Amazing Half Court Shot!

Sweet Iris Channel

Nice Knon 4 Sweet Iris Coverage 2/12/15 11PM

GM1 Gangliosidosis - Hope 4 Fiona