Meet Austin – Leukemia Warrior

“The funds we have received from NCCS have helped tremendously.”

Anyone who has brought home a newborn for the first time knows the trials of new parenthood. The joy, uncertainty, and pure exhaustion make for a rollercoaster of emotions. But for Austin’s parents, Chelsea and Chad, the worry of parenthood intensified even more.

Austin was born in July of 2020 – and six days later was diagnosed with a disease called adrenoleukodystrophy (ALD). Affecting only 1 in 17,000 people, ALD is a rare neurological disorder that affects the adrenal glands and brain. The treatment for ALD is a bone marrow transplant – and the best donor for such a procedure is a matched sibling.

Chelsea and Chad made the decision to begin in-vitro fertilization (IVF) shortly after Austin’s diagnosis. The couple was successful in conceiving and happily welcomed a baby girl, Oakley Faith, into the family. Oakley is Austin’s perfect bone marrow match – a true miracle. The family could breathe easy knowing they had a cure for Austin’s ALD if it was ever needed.

Austin began preschool when he was 2 years old. Like many kids who begin school, he began getting sick more often. His parents assumed it was because of the exposure to new germs. But bloodwork was requested when his fevers wouldn’t go away and he had pneumonia for the second time.

To his parents’ shock, Austin was diagnosed with acute lymphoblastic leukemia (ALL) on January 15, 2023. His parents couldn’t believe their baby boy was hit with another monumental challenge at just 2 ½ years of age. Their world was once again flipped upside down.

Austin spent four days in the hospital when he was diagnosed, and his treatment plan includes weekly visits to the hospital for at least two years. The family lives an hour away from the hospital and has found they are making the trip multiple times some weeks due to ER visits, bloodwork, and chemotherapy.

The Juggling Act

Chelsea and Chad have a lot on their plates, to say the least. The family is learning to juggle a multitude of tasks: various appointments, keeping medications straight, devoting time to work, maintaining the house …and of course caring for two young children. While both parents work from home, Chelsea is currently working part-time to care for Austin’s needs. Thankfully, Chelsea’s mother is able to help care for Oakley when Austin is getting treatment.

Chelsea is grateful there are organizations like the NCCS that help families struggling with childhood cancer. The NCCS has been able to relieve some of the family’s financial hardships through the Emergency Assistance Fund and the Transportation Assistance Fund, which alleviates the burden of travel costs associated with cancer treatment.

While Austin’s cancer journey has just begun, his family and medical team are impressed with the way he is handling treatment. He will continue to fight, and the NCCS will be with him every step – and every mile – of the way. Because no family should go through childhood cancer alone.™