The Beginning of a Journey into the Unknown with Axel Steele

The Beginning of a Journey into

the Unknown with Axel Steele

Gideon Thompson

The Ashland Beacon

A day may look different for all of us as we wake up each day, perceiving the world as being one way or another based on what we know of it. For a child, the world may look much different than it does to an adult, whose day may present challenges of work, conflicts, and outcomes based on interactions with our surroundings and others who may be near to us. Where one of us may see the world as a consistent path of daily routine, someone else may see each day as unique and defined by their current state. For children, their days are ideally filled with laughter and the comforts of their friends and family as they study the surroundings, they may find themselves in. The world is an inviting and curious place that children marvel at as they discover where they are and who lives in this magnificent place along with them. While some may find their journey comforting and free of struggle, others may be fighting to survive while attempting to enjoy the greatness this life has to offer.

An extraordinary boy with some extraordinary medical concerns is braving the future head-on with his loving family and friends. A resident of Flatwoods, Kentucky, and a student of Russell Schools, 7-year-old Axel Steele is not only discovering what the world around him is, but he is also confronting and fighting his way through terminal illness and some diagnoses that carry with them uncertainty and confusion for a boy his age. Axel has been diagnosed with autism, brain cancer, and Sanfilippo as of a few months ago and is now on a journey of uncertainty, as there are no cures or treatments due to conflicting treatments and bodily processing from his brain cancer and Sanfilippo diagnosis. Sanfilippo is a genetic disorder that affects metabolism by preventing the breakdown of sugar and heparan sulfate, which are responsible for cell development, communication, and production in the body. Without those, the body deteriorates, and the brain begins to slow in function and relay. With brain cancer and Sanfilippo, treatments are minimal, and Axel now finds himself in a place where he will continue to fight with what he can while taking the world in for what it is. As a young boy, his days are spent with family and friends at school and home alongside teachers and medical professionals. While some children are spending time chasing dreams and discovering the world for themselves, Axel is finding the world with what time he has available.

While Axel and his family make sense of his diagnosis and reach into the world for information surrounding it, Axel is racing to have as much fun as possible, as most children his age are. With little understanding of what his diagnosis means at his age, he views the world openly with love and compassion as he embraces each day without restraint. When speaking to his grandmother, Marnie, she described him as a “good boy with a heart full of love, and he has a smile that makes everybody want to smile back. Axel touches the hearts of everyone he comes into contact with.” Braving the odds and stepping into a world he may never understand is very difficult, as he openly and courageously accepts that the world is the way it is, with each day being as wonderful as the next. With support and care from his family, friends, and community, Axel will continue into the unknown alongside loved ones, with a smile that melts and a heart full of gold.

Sanfilippo is an uncertainty, as the brain begins to break down due to a lack of sugar intake and heparan functions. Memories begin to fade, and dementia may set in for those diagnosed as functions begin to slow for those who carry the disorder. Axel’s parents, Mariah and Alex Steele, are carrying Axel into his future with the help of his relatives and community as he endures the inevitable. With the inability to operate, treat, or suppress Sanfilippo and brain cancer, Axel’s options are limited to enjoying his time here with us and his family. In consideration and support for Axel, fundraisers have been set into place so that he might enjoy each day to his fullest ability. Braving into the future with his brother and sister alongside his family, he hopes to find some comfort in the world while discovering ways to survive the day-to-day needs for someone with his diagnosed conditions.

Costs of medical visits, medications, travel expenses, and outings add up quickly and bring with them high price tags. As Axel pushes forward, funding and support have been set up in his favor by his family, friends, and community. A GoFundMe account has been placed into operation for Axel at gofundme.com/f/support-axel-as-strong-as-steel. Along with the funding account, Axel has an upcoming waffle auction in his honor that should be available for attendance and donations soon through his funding applications and his family’s Facebook pages. Donations are greatly appreciated and are going to be distributed toward Axel’s medical visits and living needs.

As we move into the new year and strive for our dreams, others may be struggling to do so. With every donation made toward Mr. Steele, he may find a little more comfort and stability each day as he moves toward more aggressive treatment and struggles to discover what world there is for him. For anyone looking to make a difference in Axel’s life or help him find the life he deserves, donations, support, suggestions, and networking are greatly accepted and appreciated by everyone. Life and the pursuit of happiness may look different for everyone, but with unity, compassion, and care, Axel may find even more love and light along his great journey into the unknown.