The Tiniest Hero

“He’s such a goofball,” says Tamra, when asked to describe her five-year-old son, Aaron. She pulls out her phone and begins playing videos of him – moments from the days when he could still speak. The sound of Aaron’s carefree laughter fills the living room with sunshine. “In preschool, he was a jokester,” continues Tamra. “He would try and fool his teachers by pretending he was napping. He is still kolohe (a rascal).”

Aaron is lying in a special wheelchair next to his mom, a cute boy with light hair and beautiful brown eyes. As he listens to the video of himself giggling, he signals his excitement by shaking his hands. In his lap sits an action figure of Captain America, his favorite superhero. Tamra looks over to Aaron and smiles, the way a devoted mom looks at her child.

Aaron was just 18 months old when Tamra first suspected something was wrong when he kept bumping into walls. He underwent eye surgery to correct crossed eyes and started visiting an orthopedic surgeon to figure out why his mobility was deteriorating. By age 3, he needed a walker to move around his classroom. In January of last year, the final diagnosis came in. It was metachromatic leukodystrophy, a rare disease that attacks the nervous system. Aaron is the only person in Hawaii diagnosed with it.

Tamra turned to her family, friends, coworkers and congregation for strength. She also knew about the positive work of Hospice Hawaii, so she called for help. The next day, the pediatric team arrived to provide Aaron with everything he needed: an adjustable hospital bed so he could breathe easier at night, an oxygen tank, medicines to ease his pain, and a suction machine to clear his airway.

Roman, a Navian Hawaii massage therapist, visits Aaron each week to provide a calming massage. Jessica, a Hospice Hawaii counselor, works with Aaron’s sister, Aria, to help her cope with her brother’s illness through art therapy. And Linda, a Hospice Hawaii social worker, provides counseling and emotional support to Tamra so that she knows, no matter what, she is not alone.

Tamra is committed to keeping Aaron’s life comfortable and filled with joy. He continues to go to school where he gets high-fives from the JPOs and rock star-treatment from his teachers and classmates.

On his 5th birthday, Tamra organized a Captain America-themed party, where Aaron got to meet his favorite superhero in person. For a young boy who has had to deal with so much, Aaron has faced his illness not with bitterness, but with happiness in his heart.

To his family and community, Aaron is the true superhero – a five-year-old boy who is the strongest (and goofiest) person they know.

At Navian Hawaii, it’s about living your remaining days with dignity and comfort in a way that you choose to. It is through the generous donations of supporters like you that we can provide comfort and care throughout the remainder of some inspiring lives. Every penny makes a difference. Please give.