Our Story
Andrew Herrington-Gilmore and Lauren Giannini, Founders
Mara is now a happy, healthy, tough as hell, extremely social second grader. Although there is a 20-40% chance of relapse over the first five years following treatment, she has been in remission for four full years. She’s also the best big sister to Jay.
Jay, born in the middle of Mara’s treatment, is in various therapies five days a week, takes daily medication for his cystic fibrosis and has had numerous stints in the hospital due to the effects ATRX and cystic fibrosis have on his little body. It took about eighteen months to get Jay to eat willingly and regularly, and then it took another year for us and his doctors to realize the pancreas issues he was having were not syndrome related. It was shortly thereafter he was diagnosed with cystic fibrosis. There are only about 500 known cases of ATRX worldwide. We know it causes significant physical and mental disabilities, but we do not know exactly how severely Jay will be affected, and we are not yet sure how cystic fibrosis will affect him in the long run (though his life has only improved since the diagnosis because we are now treating it).
We love to focus on what Jay can do. Doctors told us he would likely never walk or talk. Jay took his first steps in the summer of 2022 and now walks everywhere he goes. He’ll be running in no time. He is extremely active and social, has great receptive language and is steadily learning to use a speaking device. His determination to communicate and learn and grow is inspiring. He is wildly smart and a quick study – constantly shocking his therapists, teachers and caretakers. Extremely personable and affectionate, Jay is very quick to give out hugs and kisses, and always wants your attention. Anyone who is around him loves him. He recently started 4 year old preschool and is doing great.
Given our unique experience and lessons learned, we could not be prouder to start The Gilmore Family Foundation to fund initiatives that ensure all kids with rare diseases get the care they deserve so that all families are equipped to keep going together.
We established The Gilmore Family Foundation in summer 2022 and run and manage it together on our own time without pay or compensation. We met in college at Illinois Wesleyan University. Andrew, an attorney and currently the Associate General Counsel of the Chicago Bulls, and Lauren, a CPA, got married in 2013. In early 2018, we made the move to the suburbs and closed on our first home, intending to move in July 2018. Then, on a dime, our world forever changed.
We have two children. Our daughter Mara is seven and our son Jay is four. On July 5, 2018, Mara, then two, was diagnosed with severe aplastic anemia (bone marrow failure) – her bone marrow just quit producing enough blood cells. Her diagnosis came right after we found out Lauren was pregnant with Jay. On August 27, 2019, just two weeks after Mara completed treatment, Jay was diagnosed with ATRX syndrome. On April 21, 2022, in addition to ATRX, Jay was diagnosed with cystic fibrosis. We are the only family in the world to have had all three diseases.
Mara underwent treatment for severe aplastic anemia from August 2018 through August 2019. She was treated at the MACC Fund Center for Cancer and Blood Disorders at Children’s Wisconsin under the care of Dr. David Margolis and his team. How and where to treat Mara was the hardest decision we have ever had to make. Severe aplastic anemia is not survivable unless you have either (i) a positive response to immune suppression therapy or (ii) a successful bone marrow transplant. Either treatment option was available to Mara, but neither was obvious. Four separate hospitals gave us four separate opinions. Ultimately, we went with immune suppression therapy. After completing a year of treatment, she had a full positive response and has been in remission since. We cannot possibly thank Dr. Margolis and his team enough. We are so grateful to have found them.