Today we’d like to introduce you to Elisa Seeger.
Elisa, we appreciate you taking the time to share your story with us today. Where does your story begin?
My son Aidan was diagnosed with ALD – Adrenoleukodystrophy in 2011 – he was just 6 years old. He was in first grade and prior to having some vision problems which led us to the diagnosis he was perfectly healthy. Once he was diagnosed -on June 2, 2011, we were on a mission to save his life. We went to Univ of Minnesota and then Duke for work up. We opted for Duke and moved our family down to North Carolina from NY. Aidan was admitted and went through chemo and received a bone marrow transplant – the only approved treatment at the time. It was grueling and Aidan lost all of his abilities – his ability to see, hear, walk, talk, eat –
Aidan spent the last 10 months living in the hospital – 7 months at Duke and 3 months at NYU before succumbing to ALD on April 29, 2012, During this time I was researching anything that could possibly save his life I came across the fact that there was a newborn screening test for ALD – but not one state was putting it to use. This would have meant the difference between life and death – not only for Aidan but for thousands of boys across the country.
I knew at that moment this was my mission. I lay in the hospital bed with Aidan and called the NYS Lab and spoke to Michele – one of the lab directors. We spoke about how to add the condition to the panel. After Aidan’s passing – I started the foundation in late 2012 and embarked on legislation to add ALD to the New York State panel.
On March 29, 2013 “Aidan’s Law” was signed in New York and we became the first state to test all babies for ALD. I knew then this was not enough- what about the babies born in the 49 other states?? What would happen to them? I started speaking at newborn screening committee meetings across the country and had Federal bills introduced in 2016.
Surely this has to be a national effort – don’t ALL of our babies deserve the same chance at a normal, healthy life?
We call this effort the “Eradication of Death by Zip Code” and although we are now at 29 states testing for ALD it is not enough. Our federal effort is working on having ALL federally recommended conditions added to state panels and cutting down the time to implementation from a decade or more to five years or less.
I’m sure you wouldn’t say it’s been obstacle free, but so far would you say the journey has been a fairly smooth road?
Noooooo – The struggles are primarily funding – speaking at the state newborn screening committee meetings and having the committees vote unanimously but then hearing the states do not have funding to implement.
Having larger organizations believe that the state-by-state method is the best – leads to loss of life. We have a valid test and a viable treatment for these conditions – what is lacking is the state addition of these conditions in a timely manner.
As you know, we’re big fans of ALD Alliance. For our readers who might not be as familiar what can you tell them about the brand?
I am currently in real estate – as a real estate broker in NY working for the Agency.
The ALD Alliance is a labor of love where we strive to save babies from conditions that can be treated if diagnosed at birth.
We host an annual medical meeting every year in January, have created a parent’s guide for ALD to help newly diagnosed parents, we are creating a Psychological impact of ALD guide with the help of doctors from the University of Minnesota, and we help families affected financially with travel, equipment, etc.
- Website: www.aldalliance.org
- Instagram: ALD Alliance
- Facebook: Aidan Jack Seeger/ALD Alliance