In Support of The Beasley Family

On February 10th, our daughter, Eleanor Nicole Beasley, was born. Her arrival came unexpectedly at 35 weeks due to severe intrauterine growth restriction (IUGR). At first, we just thought she needed to grow some, and let her lungs get strong enough for her to breathe on her own—and then we’d be able to bring her home.

But Ellie started getting sick, and she just wasn't able to get well. She went on and off the ventilator, suffering from infection after infection. And she wasn't able to grow nearly as much as she should have. When she was three months old, we discovered through genetic testing that Ellie had what’s known as MIRAGE Syndrome, a rare genetic disorder caused by a mutation of the SAMD9 gene on chromosome 7.  She was among about 60 patients to be diagnosed in the world, and very little research has been published about her syndrome. MIRAGE is an acronym that stands for (M)yelodysplasia, (I)nfections, (R)estriction of Growth, (A)drenal Hypoplasia, (G)enital Phenotypes, and (E)nteropathy. Eleanor had symptoms in each category, making her case particularly severe. Limited treatments are available for those suffering from MIRAGE, and most children with this disease will not live to their second birthday.

On June 14th, 2026, one month after her diagnosis, Eleanor passed away at the age of four months old. We were there with her, holding her, reading to her and singing to her, as she took her last breath.

In the wake of her loss, we are still under the weight of medical costs that mounted during her four months of life, alongside other unanticipated expenses and significant decrease in income. Any financial contribution would be so helpful as we navigate this season. We are grateful for all of your support and prayers.


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Additional update from the organizers: As the Beasley family continues to go through such a difficult time, we would like to ask that you also help us come alongside them and deliver meals. James and Erin have to travel 45 minutes one way (on a good day of traffic) to get to the hospital and see Ellie. This is a large commuting that does not lend to the time and energy required to prepare nutritious and filling meals. There is currently a separate MealTrain set up that allows for volunteers to select a day to deliver food. https://www.mealtrain.com/trains/v637k6