I have a 23 yr. old son with epilepsy--his first seizure was when he was 2 1/2 years old. My son was so much like Danny when he was in his preschool years--exuberant, athletic, eager to learn, always smiling, joking, laughing, and with hugs and love for everyone! I felt an instant connection because of our boys.
I have stayed pretty involved in different epilepsy communities online--wanting to reach out with encouragement and support to others, since we have a lot of experience under our belts living with a child with epilepsy. I say WE because living with epilepsy, does not just refer to the individual who has the diagnosis, it affects the whole family and friends too. I research and read a lot to try to stay ahead of the game--but epilepsy is still a mystery in so many ways...making it difficult to navigate and leaving many feeling frustrated and alone. Taking our story, our experience, what I've learned along the way--and giving back to others or coming alongside others is something I really enjoy doing. When I'm able to tell a parent of a child newly diagnosed with epilepsy-- "You aren't alone" "I've been in your shoes" "How can I help?" "I'm here to listen"--it empowers them and offers a lifeline in the midst of what can sometimes be a frightening, confusing, and isolating experience. There is one experience that I lack and can not say I have in common with people when they encounter it while dealing with epilepsy in their lives. There is one experience I haven't had that Mike and Mariann have--their son Danny died from SUDEP.
Sudden Unexplained (or Unexpected) Death in Epilepsy. Mike and Mariann's son Danny died from it. It wasn't my son... but I know it could have been. It could have been any one of the 3 million Americans affected by epilepsy or of the 50 million worldwide. The Stanton Family started, and are leading, the Danny Did Foundation with COURAGE, PASSION, and DEDICATION. The DDF is dedicated in its mission to prevent deaths (like Danny's) caused by seizures. I have chosen to support the Stanton family and the Danny Did Foundation because I believe in their mission, in their goals, in the fire and fight they carry in their hearts and in their heads, and finally because I believe in their boy--just like I believe in mine.
I wanted to spread Danny's smile, his story, and awareness of the Danny Did Foundation in Southern California. My initial contact to the Foundation was via email with DDF Executive Director Tom Stanton (aka Danny's uncle). I requested DDF silicone bracelets and SUDEP/Seizure Safety brochures to distribute at the Epilepsy Foundation Walk in Los Angeles where my son was captaining a team and our family and friends were walking together. The communication was encouraging and supportive. With approval from his family and the foundation, Danny was an "Honorary Hero"on our team. We stayed in touch with the DDF, and got to know another vital person to the Foundation--Mary Duffy, Chief Operating Officer. Mary is a neighbor of the Stanton Family--their kids all good buddies. Do you see a pattern of community in this Foundation? It's incredible!
One thing that I find attractive and appreciate about the Danny Did Foundation is their intergenerational intention in their goals, actions, and appeal. They recently sponsored an essay contest with a $1000 scholarship award encouraging eighth grade students in Chicago to address in their essays 1) The importance of helping non-profit foundations and 2) A projection of how to best introduce and incorporate the Danny Did Foundation into the high school experience. They awarded the winner in June at the DDF Hearts & Hugs event. Another great move?...The Danny Did Foundation has a Kids' Liaison! Mary Grace Stanton (Danny's sister) fills that role, and she's involved other kids by inviting them to complete and submit "Get Seizure Smart" quizzes. In return, she sends them a Danny Did bracelet. The Danny Did Foundation holds regular events--which appeal to children and adults.
The Danny Did Foundation has a definite presence in their local community and beyond. They have a knack for bringing people together...a diverse group of people united by Danny and a desire to prevent deaths caused by seizures.
I really can't express in this space all that there is to be said about the Danny Did Foundation. You'll need to go check out the Danny Did Foundation website at www.dannydid.org to explore and experience it for yourself. While you are there, be sure to check out the testimonies of what people are saying about the Danny Did Foundation. Oh, and you can leave a "Hey Danny," message on the home page.
I've personally experienced the results of this organization in...
The DDF has resulted in many new connections. There are connections of grieving w/ the Stanton family and other families who have lost a loved one to Sudden Unexpected Death in Epilepsy and there are connections of joy and celebration in putting into practice the words Mike wrote at the end of Danny’s death notice: “Please go and enjoy your life. Danny did.” The awareness and education piece has resulted in people learning about SUDEP who didn't know about it. Equipping and empowering people is HUGE.
Ways to make it better...
If I had to make changes to this organization, I would...
hmmm... I think that this organization is doing everything right! They have achieved incredible goals and accomplished amazing things in their short existence... just like Danny! The DDF is effecting change locally, nationally, and internationally with regard to SUDEP and Danny has inspired many to be grateful, to be loving, to enjoy life, and to give more hugs! This leaves me in a position of wondering how there would be anything "I had to" change in this organization. Thanks Danny! :)
Would you volunteer for this group again?
For the time you spent, how much of an impact did you feel your work or activity had?
Did the organization use your time wisely?
Would you recommend this group to a friend?
What one change could this group make that would improve your volunteer experience?
At this point in time, my volunteer experience has all been good and I do not have any suggestions for ways the group could improve upon it.
Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)
Can any one have a volunteer experience without it having an effect on him/her? :) Volunteering with the organization has equipped me with educational materials to share with others. While being more comfortable addressing an individual or small group, I am becoming more confident in addressing larger groups now. In addition, I am now equipped with Danny's story. Since I have not personally dealt with the loss of my own child, Danny's story has become one of my connecting points when talking with others about SUDEP. Last but not least, my volunteer experience has made it possible for me to meet incredible & extraordinary people.
How did this volunteer experience make you feel?
Inspired. Creative. Energized. Valued. Welcomed. Connected. ♪ Whoa! I feel good, I knew that I would ♪ There is also a feeling of grief involved in walking alongside as a volunteer with this organization. "Whose cup is this? It is our cup, the cup of human suffering. For each of us our sorrows are deeply personal. For all of us our sorrows, too, are universal." ~ Henri J.M. Nouwen
When was your last experience with this nonprofit?