Hello all,

Dr. Jessica Yanosik and I are fundraising for our colleague Aaron Rushing, his wife Hannah, and their son Maxwell. Please consider donating to the Rushing family as they navigate this difficult time with their beautiful five month old son. All proceeds will be gifted to the family.

From Aaron:

"My wife, Hannah, gave birth to our beautiful baby boy on August 25, 2022. Maxwell Joseph Rushing has changed our lives more than we could have ever imagined, unveiling more of his magnetic and bubbly personality every day.

On Valentines Day, he had a blood draw for concerns about slow weight gain. The results showed a significant metabolic acidosis leading us to hospital admission at Colorado Children’s later that night.

Once admitted, Max experienced an acute metabolic crisis which led to ICU admission. He has been slowly recovering since then.

To determine the root cause of his condition, Hannah, Max, and I sent DNA samples to a genetics testing center to look for inborn errors of metabolism. We received his diagnosis on Sunday. Max has a rare genetic condition called ACAD9 deficiency.

ACAD9 deficiency affects the mitochondria, energy production, and lipid metabolism. Patients with ACAD9 deficiency often exhibit cardiomyopathy, and Max has proven to be one of these patients.

His diagnosis is certainly grim, but it does come with lifestyle recommendations and it has evidence of an effective targeted drug therapy which he has already begun receiving. Many of the other diagnoses that were possible do not have therapy or guidance. Maxwell’s diagnosis will help direct us in taking better care of him and in avoiding future exacerbations. This will entail avoiding extreme fatigue and periods of extended fasting as well as prompt medical care with signs of mild sickness or infection. In addition to that, we can only hope for minimal progression of his cardiomyopathy, and that new-onset organ dysfunction does not arise.

Our little boy has demonstrated his strength and resilience by living with this condition his whole life. We are taking inspiration from him and approaching the future with the strength of Maxwell.

-Aaron Rushing