Kristen Rilling is an amazing mom who, since losing her daughter, Fallon, has worked hard to help other families from experiencing what she and her family went through.
Fallon was born on October 10, 2013, at 4:44 a.m. Minutes later, she was whisked away from her parents and the decision was made to send her to another hospital with an experienced NICU. In less than 24 hours, she was moved to a third hospital, Morgan Stanley Children’s Hospital in New York City, which had a yet potentially life-saving heart and lung bypass machine called an ECMO machine. Fallon arrived with minutes to live.
Fallon passed away a few days later, on October 21. “We held her while she took her final breath; a moment we will never, ever forget,” said Kristen.
Kristen Rilling and her daughter, Fallon
It was not until two months later with Fallon’s final autopsy results that a lung biopsy revealed Fallon had died from a rare disease called Alveolar Capillary Dysplasia with Misalignment of Pulmonary Veins.
ACD/MPV is a rare, incurable lung disease that is apparent at birth. It affects the development of the lungs and their blood vessels. Without a lung transplant, ACD/MPV is fatal. Babies are not likely to survive long enough waiting for a donor (another infant), and even less likely to survive the transplant.
The cause is not known. Only 400 known cases have been identified worldwide since ACD was discovered in 1947.
Since Fallon’s death, Kristen has set out to raise money for ACD research.
“If even one baby can be saved based on that research – we would be so happy,” said Kristen.
To make this happen, Kristen and her family teamed up with the ACD Association, a group of parents around the world who have lost a child to ACD.
In the spring of 2002, ACDA established an ACD Research Account at the National Organization for Rare Disorders (NORD), the leading nonprofit in the U.S. dedicated to helping all patients with rare diseases, and any donation to NORD can be earmarked for ACD research.
On February 10, 2014, a year to the day Kristen and her husband, Bob, learned they were pregnant with Fallon, they made their first donation of $16,444.44. This brought the balance in the ACD Research Account over the magic number of $33,500, the amount needed before NORD can initiate the grant process to award research money to the medical community.
In total, Kristen has raised a total of more than $33,000 for ACD research through her GoFundMe campaign.
“So many people supported us and wanted to help, and they didn’t know how,” said Kristen. “Our friends and families and even complete strangers who stumbled upon the page made donations in honor of Fallon.”
Kristen continued, “We knew the only way to get research done for this disease was through NORD and to hopefully get some research grants, and for that they needed money. If people wanted to donate a dollar or five dollars, we were not asking for much.”
On February 17, 2015, Kristen and her husband, Bob, and their children Avery, 5, and Harper, 3, welcomed another member to their family, a daughter named Keaton.
Kristen says she went through this pregnancy petrified, not knowing if their new baby would also have ACD.
She says it is possible for families to test for ACD with later children once the genetic biomarker has been identified with a previous child, in this case, Fallon, and “we opted against the risky, invasive testing and just prayed against the 1 in a million chance it would happen again.”
She added, “We talk about Fallon all the time. My son would ask if the new baby would come home, or if it would go to heaven with Fallon. These are the types of questions we were fielding. We talk about Keaton as a gift from Fallon. Keaton has the most amazing guardian angel, looking after her.”
These children have one wonderful mom, too.
NORD is honored to tell Kristen’s story as part of our celebration of moms this Mother’s Day (#myraremomstory). We are grateful to her for sharing her story, for raising awareness, and for raising funds that support research for ACD.
To make a donation to the ACD Research Account, or to make a donation in honor of a mom in your life this Mother’s Day, please visit our Donate page.