Candida Stoutenborough, Los Angeles Walk Committee

My Participation in the Los Angeles Hope, Steps & A Cure Walk

My journey and commitment with the Aplastic Anemia & MDS International Foundation took off immediately the day I discovered them.  My daughter Mia was diagnosed with Severe Aplastic Anemia in 2009, at the age of 15.  I feel privileged to be a part of the committee for the Los Angeles Hope, Steps & A Cure Walk, working with others who are as passionate as I am about this remarkable organization.

The day Mia was diagnosed turned our whole life upside down...we were in shock.  We had never heard anything about this rare bone marrow failure disease.  After searching the Internet for days, I found only one place that could help us; the AAMDS website.  After devouring the information available to me, I sent an email to the Foundation’s Patient Educator.

The very next day the Patient Educator called me back.  She gave me her time, undivided attention, clear and direct answers to my questions, easy to understand information, and compassion and support about this rare disease.  I was given phone numbers of other parents from the Peer Support Network, who could share their stories and personal experiences.  They also helped put me in touch with some of the top doctors in the field.  They encouraged our family to attend the Patient Family Conference (which was being held in Indianapolis that year - July of 2009).  They even helped with arrangements for my daughter to attend (who was very sick at that time and very weak to be travelling); making sure all her needs were met at our destination.  Without AAMDS, we could not have made it through all that lay ahead of us.  They have helped our family carry the burden of this ongoing terrifying illness.

Volunteering our time, spreading awareness, holding bone marrow drives, participating in the Hope, Steps & A Cure Walk, and fundraising on behalf of AA&MDSIF is the most important way we can give back to this wonderful foundation.  I happily participate in contributing my time to the foundation so that they can continue to provide programs and services, hope and support to other patients and families, just like ours.