Transcending Our Own Story“We are not here to tell our stories, we are here to transcend them.”
A quote I live my life by…yes I thought of that one!
Imagine this: Sitting in a hospital room with your beautiful 18 month old baby girl that is having chemo treatments daily, pumped through her weak body to ensure that the leukemia will be gone… and for good. Your three year old, sweet little boy, is at home waiting for mom to get back. And get this… You are pregnant with your third child.
That was my Michelle. Eight years ago, that was her life. I flew into Durham, drove to Duke Medical Center and sat with her in that room with Anna in awe of Michelle. In awe of the strength that many parents have, and that they actually just do what they need to do, anything, for their child to survive. I remember sitting with her and looking into her eyes filled with sadness and hope at the same time. She and I had “grown up” as adults together and this was definitely a defining moment in both of our lives. I looked at her and said, “Someday we will both look back and understand the reason for all of this.” I truly knew in my heart that everything was going to be ok. And what was amazing to me was that I believe Michelle did too.
As the story goes, Anna recovered fully! The gifts of her illness and more importantly, of her life, are endless. What is even more incredible to me is that Michelle never talks about her story from a place of victimhood. Never has, never will. She takes her story and “transcends” it. She created this foundation out of a true gratitude for Anna’s life.
Here is a quick Q&A with Michelle about Anna’s Angels:
Why did you start Anna’s Angels?
Anna’s Angels was started from the passion and love for my daughter. When Anna was a baby I would hold her and look at her sweet face knowing I had to do what I could to ensure she would grow up to be a happy, healthy and independent person.
Anna is now ten and a beautiful magical little girl. I am so blessed and proud to call her my daughter. I will continue to work diligently and push Down syndrome research forward so she can live her best life.
How did you start Anna’s Angels? What was its evolution?
When Anna’s was at Duke for her chemotherapy treatment I talked to the Chief Oncologist , Dr. Rosoff, about research in the area of Down syndrome. I was surprised to learn how little research had been done in this area. There are over 400,000 people with Down syndrome in the United States and we were not doing enough to improve their lives. From these initial conversations I became more determined that someone had to help. I could not stop thinking about “this need” and decided that I must put my fears aside and that is when Anna’s Angels was formed.
What were your biggest challenges in expanding your foundation?
I think the biggest challenge is continually growing our network. We have a wonderful group of generous and dedicated donors. Expanding this group would provide us the ability to move quicker and support more research.
Can you tell us some of the highlights of how Anna’s Angels has helped the field of research in Down syndrome?
There are so many research projects that we have funded but here are a few highlights:
• Anna’s Angels funded the creation of a Down Syndrome Registry and a BioBank. Both databases are key to building a solid infrastructure for research projects.
• Anna’s Angels also funded research in iron deficiency in young children with Down syndrome. This led to a new test to diagnosis iron deficiency correctly. Many children were going undetected. Once the deficiency was found the child was placed on iron supplements to correct deficiency.
• Key research in Alzheimer’s genes and Alzheimer’s drugs which has lead to a better understanding of the genes and also continued studies in this area. This is a great area of interest for improving cognitive function.
What is your vision for the future of Anna’s Angels?
Our future vision is to improve the cognitive and communicative ability of individuals with Down syndrome.