I am excited to announce that I am participating in the IRONMAN Chattanooga on September 24, 2023. I will be pushing my limits by swimming 2.4 miles, biking 116 miles, and running a full marathon of 26.2 miles, covering a total distance of 144.6 miles.

As I have embarked on my training program over the last several months, I have learned so much about what is needed to take on this kind of challenge: resiliency, tenacity, perseverance, faith, and strength to name a few. My thoughts have frequently turned to someone very special who embodies these traits every day. Not for the purpose of crossing a finish line, but to overcome the hurdles of everyday living, learning, and developing. That person is my son, Leo Takashi Elkins, whom we affectionately refer to as “Leo the Lion.”

Leo has Stickler Syndrome, which is a progressive genetic disorder that affects a person’s connective tissue. It can contribute to joint issues, physical malformations in the craniofacial area (he has had a complete cleft palate repair and a jaw distraction procedure), and impacts hearing and vision. Because of his dual sensory loss, he has been medically identified as deaf-blind. When both vision and hearing are compromised, the combined effects create severe barriers in communication, developmental and educational needs.

We have been beyond blessed to have advocates and organizations supporting us from the beginning of our journey. We would like to take this opportunity to raise funds in Leo’s name and give back to some of those who have given us so much!

Family Voices of Tennessee (familyvoicestn.org) was the first organization that we were introduced to after receiving the syndrome confirmation. Family Voices provides resources, support, and guidance for families as they care for children with special healthcare needs. The local coordinator has gone above and beyond with her unwavering dedication, mentoring, and cheerleading!

The National Family Association for Deaf-Blind (nfadb.org) was founded with a mission to “empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.” They have certainly done that for us! Their informational workshops, support groups, and networking opportunities have been paramount in helping my wife navigate this journey for Leo. In fact, they are the group that provided national advocacy training, motivating us to march ourselves to Washington D.C. to meet with our Senator and Congressman on behalf of deaf-blind people!

A portion of the donations will also go to support Leo’s developmental learning classroom. His amazing teacher is raising funds to purchase play-based learning materials to help the students engage in sensory play, art, music and motor skills. It takes thoughtful and unique educational approaches to ensure that deaf-blind children can reach their full potential. The items purchased for the classroom will help support this!

Unrelated to his syndrome, Leo is also autistic. He has been attending ABA therapy at Elevate Behavior Services for over two years. We have seen such growth and development in that time. They are helping Leo flourish into who he is meant to be! Elevate has big plans in their new location to continue supporting autistic children but needs funding to help make some of these plans come to fruition.

Hope's Haven is a Christ-centered camp for children with special needs. Their goal is for kids of different abilities to be together in community spirit and experience what all kids do! Not to mention, letting families reset and refocus while their child is cared for so well. Follow them on Facebook @hopeshaventn.

Hope's Haven is supported by Hope Included (hopeincluded.org), a not-for-profit corporation whose mission is "to make inclusion and access the only way in our community." Both entities were created after the sudden passing of an amazing six-year-old named Hope; a bright light whose goal every day was to share her joy with the world.

This has become about more than just completing the 144.6 miles. Your contributions to our fundraising endeavor in honor of Leo would mean the world to me, and of course to my wife, Lissa (the real IRONWOMAN!).

Thank you,

Taka