A Family for Care
By Farah Bassyouni '25
For Lauren Giannini '08 and Andrew Herrington-Gilmore '09, receiving their children's diagnoses of rare and life-threatening diseases became their life's greatest challenge and their new inspiration to help others.
For any parent, a child鈥檚 diagnosis with a rare disease is an overwhelming experience that reshapes daily life and family dynamics. But for 91黑料专区 alumni Lauren Giannini 鈥�08 and Andrew Herrington-Gilmore 鈥�09, it was also the spark that led them to found The Gilmore Family Foundation. Established to support families like their own, the foundation raises funds for the Undiagnosed and Rare Disease Program at Children鈥檚 Wisconsin, a first-of-its-kind initiative dedicated to diagnosing and treating rare childhood diseases.
In 2018, when their first child, Mara, was only two years old, she began showing strange symptoms. Small bruises appeared across her body, accompanied by a cluster of red spots known as petechiae鈥攁 warning sign of potential blood disorders.
鈥淚 thought she was just clumsy at first,鈥� Andrew said.
It was Lauren鈥檚 mother who first noticed the severity, urging them to see a doctor. The pediatrician's response was immediate: Mara needed urgent care. Their family鈥檚 life changed completely overnight.
Lauren, Andrew and Mara were soon plunged into a world of frequent hospital visits, medical jargon and exhausting treatment regimens. Despite the struggles, Lauren and Andrew remained determined to find answers and secure the best care for their daughter.
Eventually, Mara was diagnosed with severe aplastic anemia due to bone marrow failure 鈥� a diagnosis that was especially rare in her case given her age. Her body stopped producing red and white blood cells or platelets, meaning it couldn't fight off infections, form blood clots (hence Mara's easy bruising) or provide enough oxygen to vital organs. This also means a common cold could potentially be life-threatening, so every measure had to be taken to ensure Mara was not exposed to any illness. Lauren jokes they were social distancing before it was cool, to ensure Mara's safety.
"We had no idea what we were in for," Andrew shared. "Mara鈥檚 diagnosis was like stepping into an alternate reality where no one has answers, and you're expected to make life-or-death decisions with limited information."
Mara began immune suppression therapy and underwent a treatment similar to chemotherapy three times a day. The diagnosis hit hard and during Mara鈥檚 treatments, Lauren was pregnant with their second child, Jay.
"We had only just shared that we were expecting when Mara got sick," Lauren says. "Suddenly, it was like this double blow鈥攚e had to be strong for Mara, but I was also dealing with my pregnancy."
It would not be the last life-altering news the family received. Jay's arrival brought another wave of challenges. Born prematurely on New Year鈥檚 Eve, he showed signs of developmental differences right from the start. While doctors initially dismissed Lauren鈥檚 concerns, she knew instinctively, perhaps from previous experience with Mara, that something was wrong. After months of persistence and countless visits to specialists, Jay received his own extremely rare diagnosis of ATR-X syndrome and later cystic fibrosis.
Lauren and Andrew鈥檚 family is the only one in the entire world to be diagnosed with all three rare diseases. What are the odds?
鈥淎s far as we know, Mara鈥檚 aplastic anemia and Jay鈥檚 ATRX and Cystic Fibrosis are completely unrelated, we鈥檝e done the genetic testing,鈥� Andrew said. 鈥淎stronomically small odds.鈥�
Genetic testing is still only just achieving its potential, with more information discovered and research conducted with every passing year. Families like Lauren and Andrew鈥檚 dealing with incredibly rare cases 鈥� such as Mara鈥檚 one-in-two-million diagnosis and only a few hundred recorded cases of Jay鈥檚 conditions 鈥� may or may not get answers as research develops.
鈥淚t was surreal,鈥� Lauren says. 鈥淲e had barely come to terms with Mara鈥檚 condition when Jay鈥檚 diagnosis hit. It was like, every time we thought we could take a breath, we were back in the emergency room or sitting across from another specialist.鈥�
Doctors told the couple he might never walk or talk, but with therapy and his own determination, Jay took his first steps just a few years ago. Mara鈥檚 successful treatment and subsequent remission was an incredible relief, but for her parents, it merely emphasized the difficulties for families dealing with multiple rare diagnoses.
鈥淢ara has now been in remission for five years and we鈥檙e so happy and grateful to see the amazing, interesting, smart, funny, loving people Mara and Jay are growing up to be,鈥� Andrew said.
After seeing the exceptional care Mara received at the MACC Fund Center for Cancer and Blood Disorders at Children's Wisconsin, which specializes in blood disorders like Mara鈥檚, Lauren and Andrew realized there was a significant gap in support for children who suffer from undiagnosed or rare conditions. It was a gap they were determined to help fill.
鈥淲e were grateful beyond words for the care Mara received,鈥� Andrew said. 鈥淏ut it also opened our eyes to how hard it is to navigate the medical world when your child has a rare condition. We kept asking ourselves why this had to be so difficult.鈥�
They launched The Gilmore Family Foundation, with the initial goal of raising funds for the Undiagnosed and Rare Disease Program. The couple鈥檚 intention was also to show gratitude for the teams who cared for Mara and Jay and they hope their foundation can, in some small way, repay the kindness and expertise of the doctors, nurses, therapists, and caregivers who have been part of their journey.
鈥淭hey gave us a chance at a normal life for our kids,鈥� Lauren said, 鈥渁nd we want to make sure other families get that chance, too.鈥�
But their vision for the foundation goes beyond funding research鈥攊t also aims to raise awareness and build a supportive community around rare disease treatment. The foundation鈥檚 annual 鈥淣ight Out鈥� fundraising event has become a crucial element of their mission, raising more than $500,000 so far and securing the support of about 300 guests each year. The guests have included more than 75 IWU alumni, and the Titan men鈥檚 basketball team have volunteered to help run the event thanks to coach Ron Rose.
Families like Lauren and Andrew鈥檚 often endure years of frustration before finding the right treatment plan, if one is even available. Research shows that it takes an average of 18 months to three years to receive a proper diagnosis, and only about five percent of rare diseases have a viable treatment. The Gilmores鈥� vision, through the Undiagnosed and Rare Disease Program, is to shorten this timeline and reduce the scary uncertainty that accompanies rare diagnoses.
鈥淚t鈥檚 a world where every answer feels provisional and every decision carries immense weight,鈥� Andrew said. 鈥淥ur foundation seeks to provide families with peace of mind by connecting them with experts and resources that can offer reliable care.鈥�
The Gilmore Family Foundation鈥檚 approach emphasizes the need for family-centered care鈥攕omething Lauren and Andrew believe is essential for families facing the uncertainty of a rare disease.
鈥淲e experienced the wonderful wrap around care you get when you have a center dedicated to a specific disease,鈥� Andrew explained. 鈥淲ith Jay, we experienced just the opposite. It was the difference in the two that made us realize how important the Undiagnosed and Rare Disease Program is. For many, the rare disease medical world is completely broken. Doesn鈥檛 have to be that way. Mara鈥檚 experience taught us that.鈥�
鈥淲e started The Gilmore Family Foundation because we had to experience the broken, terrifying process of finding specialized care for kids with rare diseases," Lauren said. "No family should have to go through this alone.鈥�
The couple often credits their experiences at IWU as foundational to their resilience and determination. They met on campus as undergraduates, and those college years helped form their bond and laid the groundwork for their resilience. Both Lauren and Andrew agree that the close relationships they developed during their time there were crucial in creating the community of support they would later rely on.
"We loved every moment at Wesleyan," Lauren said, reflecting on her college experience. "We met our best friends there, the kind of friends who you travel across the country to see, even now. 91黑料专区 was like family."
Their circle of friends from IWU rallied around them and many of their college friends have become donors and advocates for The Gilmore Family Foundation. Alumni have organized fundraisers, participated in awareness events, and helped connect families with medical professionals and researchers who specialize in rare diseases. They hope to inspire current students by sharing their story and the foundation's work.
鈥淚 feel like my years at Wesleyan prepared me for this in ways I didn鈥檛 understand at the time,鈥� Lauren said. 鈥淭he sense of community, the openness to new ideas, and the incredible friendships we made have all carried us through some of the hardest days.鈥�
The foundation鈥檚 journey is still in its early stages, but Lauren and Andrew are hopeful that they can continue expanding their impact. They鈥檙e currently planning their 2025 鈥淣ight Out鈥� event, with an eye toward securing more sponsors and spreading the word even further about their cause.
鈥淲e hope our story serves as a reminder that no challenge is insurmountable,鈥� Andrew reflected. 鈥淚f we can make even a small difference, then the journey we鈥檝e been on with our kids will have had an even deeper purpose.鈥�
Today, Mara is a happy, healthy third-grader who adores her younger brother. Despite her own health challenges, she鈥檚 a constant source of joy and strength for her family. Jay, now in preschool, is defying expectations鈥攍earning to walk, speak, and connect with those around him.
鈥淥ur kids are fighters,鈥� Lauren said proudly.
Lauren and Andrew鈥檚 story is about resilience, compassion, and community support. They joke that they鈥檝e grown 鈥�20 wisdom years鈥� as a result. The couple has maintained the practice of being lighthearted with each other and with their children in the face of the struggles life has thrown their way.
鈥淵our purpose in life as a parent becomes crystal clear,鈥� Andrew said. 鈥淲e found our purpose and meaning, as horrible of a time as it was, and that鈥檚 also where we found our happiness.鈥�
When asked how they maintain such a positive outlook on life, they responded that laughter was their biggest resource. Lauren and Andrew recalled tough nights when the both of them would sit in their kitchen and simply debrief.
鈥淚t鈥檚 a balance of course, but humor keeps us going. Even on the tough days, if we can laugh together, it makes a difference,鈥� Andrew said.
The couple鈥檚 outlook on life has given them experience and wisdom well beyond their years, and their ability to stay strong, together, has helped keep them and their kids grounded, healthy, and most importantly, happy.
鈥淓very child deserves to live well. If we can make that possible for even one family, all of this will have been worth it,鈥� Lauren said.