Alexus Williams

Photo of Alexus WilliamsMy Diagnosis Story from 9 1/2 Months Old

My family would never have known that their life, and my life would change in just three and a half weeks. I was nine and a half months old when I became fatally sick. My 3 ½ week hospitalization would begin in the Pediatric Intensive Care Unit, Room 770, bed 1, and lives would change forever. When I got to the hospital, the attending physicians realized that I was lethargic and concluded that I may have been dehydrated and septic. An x-ray showed that I needed a chest tube. I still have the scar. An Endocrinologist came in, examined me, and found that it was Type 1 Diabetes because my blood sugar was 1100, one thousand times the normal result. I was the youngest patient out of everyone my doctors could find that was so young with diabetes. And because there was no genetic linkage with my parents’ family and diabetes, I was considered a statistic. I had a team of doctors 24 hours a day, 7 days a week. I was hooked up to so many IV bags, they had to be spread out on both sides of my hospital crib. I was intubated and had to have a foley catheter in place. Also, doctors had a hard time looking for an open vein that would go straight to my heart due to a cardiovascular collapse that I had. Therefore, an Anesthesiologist inserted a right jugular line, which is an I.V Line through a large vein in the right side of my neck. I still have the scar. My grandmother worked at the same hospital I was a patient in, so she and her co-workers would come and check on me whenever possible. My uncle also worked at the same hospital as a security guard and would come visit me too. My parents stayed with me 24 hours a day, 7 days a week. My condition seemed to get worse because 3 days later, my mom noticed a black stripe on my right leg. She went on to ask my grandmother about it, and then the doctors. It turned out that my right leg was beginning to lose life and pulses were becoming weak, not only that, but my left toe was also starting to turn a gangrene color. The doctors concluded that I had a blood clot that was causing my leg to look discolored because of the lack of circulation. The next day, the attending surgeon performed a procedure where he would inject a medication called Streptokinase that was supposed to remove my clot. Well, something happened because my grandmother told me this, “When you were coming back from the Operating Room (OR), the registered nurse on duty, who was someone I knew, told me she was so scared. I asked her why. She said, ‘Alexus coded (heart flat-lined), and she had to be resuscitated. I thought she wasn’t going to make it.’ My grandmother said I had died. I eventually went into a 3 1/2-hour coma. When I woke up, my grandmother said my leg looked like black leather above the knee. I had my amputation on 07/30/1992. My grandmother’s co-workers and people from other departments lined up and down the halls to provide my family with moral support. My grandmother described it as truly incredible. Someone from my grandmother’s church came and prayed over me with oil. During the surgery, the OR staff could see I was fighting to live. I was admitted on 07/22/1992 and discharged on 08/13/1992. With what happened to me, my dad describes it as crazy, traumatic, and unreal. He told me it was like a movie, a nightmare. My mom said it was like being in hell. She felt like there was no one to talk to because her family was in Colombia. I’m happy I’m alive to share my story with others, and I credit that to my Heavenly Father.

David Martin

Strong2Finish 2 Tim 4:7 

In 2018 my life changed forever. I became an ABK (above-knee amputee) on my left leg due to a flesh-eating bacteria caused by a wound that the doctor didn’t care for. I have come a long way and I am very blessed to be in the amputee community. I have been and still am writing my story in a WordPress blog. If you look up Strong2Finish 2 Tim 4:7 you will find it.

I came across that verse during rehab, and it stuck with me and became my motto. I have finished the race and I have kept the faith.

To me it means I am still here, I faced a terrible loss, but I am still here to tell my story. 

MESSAGE FROM THE PRESIDENT AND CEO

I am so excited that we all will meet in person for Amputee Coalition’s National Conference in Palm Desert, California. It has been far too long that we have not been able to come together and visit with each other face-to-face.

I applaud the efforts each of you have made to stay connected through social media channels, Zoom, Microsoft Teams calls, or whatever avenues you have found to advance the mission of the Amputee Coalition.

My name is John Register, two-time and two-sport Paralympic Athlete, combat army veteran, and now the interim President and CEO of the Amputee Coalition. For the past several years, I have served as a board member for the Amputee Coalition. I have also served as a board member for the National Association for the Advancement of Orthotics and Prosthetics.

I have attended National Conference at least seven times, but the most memorable conference for me was in Tennessee. I was working as an employee of the United States Olympic and Paralympic Committee and had taken a special assignment to support the United States Department of State as a Global Sports Mentor Ambassador for leaders who build sports programs for people with disability. At that time, I was mentoring Yerlan Suleimenov, who happened to be an above-the-knee amputee. I made it a point to bring Yerlan to the conference because I wanted him to see an organization focused on and thriving in “showing metal.”

Yerlan is the secretary-general for Paralympics Kazakhstan. When Yerlan first arrived in Colorado Springs, Colorado, home of the United States Olympic and Paralympic Committee, and now Olympic City USA, he wore his pants down to the top of his shoes.

Of course, there is no shame in that at all. I did it too when I first became an amputee. When he walked the conference hallways for the first time and saw 1,100 amputees showing their metal he was forever changed.

That evening for the opening reception Yerlan changed his outfit and came to the event wearing shorts. He also removed the cover-up on his leg. He told me for the first time in his life he felt truly free to be who he is.

This testament is true for many of you. It is an important reason why we have the Amputee Coalition National Conference. It is a chance for us to meet, to share our experiences, to share solutions, and, of course, to boogie on the dance floor. Can I still say boogie on the dance floor?

The amazing thing with Yerlan is that his growth did not stop at the Amputee Coalition conference. He took his newfound confidence back to his home in Astana, Kazakhstan, where he walked with his wife and daughter through one of the biggest malls in the area while wearing shorts that exposed his prosthesis. Once this conference is over, you will do the same. You will go home empowered to change limb loss in your sphere of influence for everyone you meet. The conference will inspire you.

For those of you who are reading this magazine article right now, I have a call to action for you. If you know someone who is living with limb loss or limb difference, or a caregiver for these individuals, then spread the word and get them to this conference. It will change their lives.

If you are seasoned person living with limb loss and/ or limb difference, we need your voice at the table. You are the guides, the sages, the ones who shift the mindsets of those who are new to this community. We need your voices.

As a professional speaker who works with leaders in the conference and event space, we will remain strategic and flexible when it comes to delivering the conference.

Do you remember the disruption that happened in your life when the pandemic arrived in March 2020? We thought it would be here for maybe three or four months and then it turned into two plus years.

Meetings and event planners are working to regain their footing in this ever-changing environment. Sometimes this change can impact what we are able to deliver. We ask for your patience and understanding knowing that our focus remains on the mission of this organization first and foremost, which is “to reach out to and empower people affected by limb loss to achieve their full potential through education, support and advocacy, and to promote limb loss prevention.”

This is our charge, and we will not stop until every person affected by limb loss and limb difference and their support communities know the Amputee Coalition continues to raise awareness about our national efforts to increase practices to prevent limb loss; to ensure every amputee lives life to the fullest after amputation; and to support amputees through pre- and post-amputation and recovery so no amputee feels alone.

To say I am excited to see you all is an understatement.

Now, go forth and inspire your world. Because go is your command, forth is your direction, and inspire is your vocation. You are here because only you can do this work, and because the work you do is in your sphere of influence.

See you in Palm Desert, California! John F. Register, CSP
Interim President & CEO Amputee Coalition

THE POWER OF YOU: Reflections

By Ana‑Maria Gutierrez

For Luis De Leon, attending Amputee Coalition’s National Conference has been a transformational experience. Today, he proudly volunteers his time, as a champion and mentor, to the amputee community. But his journey did not begin here. He recounts his first experience attending conference as a pivotal moment in his life.

On a rainy morning, more than 12 years ago, Luis was headed to work. That morning, his life changed forever. After a catastrophic accident on the freeway, he faced devastating news that his left leg must be amputated. The months that followed were difficult due to the emotional trauma that overwhelmed him. He fell into a deep depression and wanted to give up on life.

That year, the Amputee Coalition held National Conference in California. He had heard about the event, but he was hesitant to attend. After his family’s insistence, he finally decided that he would participate.

Luis says that he will be “forever thankful” to have attended. “Going to conference saved my life. It changed how I looked at life.” He had a transformational experience after meeting others who live with similar challenges. That day he was able to gain new perspectives and completely change his mindset.

Luis walked into the venue with the aid of hand crutches but after taking a mobility clinic with Bob Dailey, he no longer felt the need to rely on them. The experience had a profound impact on his confidence and at that moment he knew he was going to be fine and most importantly, was not alone.

At the conference, he was introduced to his support group, Amputee Connections of Redland and has been with them ever since. Today, he works as a peer visitor and a support group leader for the Amputee Coalition. For Luis, it’s a proud moment to know that he is helping others by giving the support he did not receive during his trauma and credits the Amputee Coalition National Conference for empowering him to step into this role.

Cathy Devine, a first-time attendee at last year’s virtual conference, shares a similar experience. Cathy underwent a recent toe amputation. She was struggling with the validity of her feelings, as in her mind, it was just a toe. She learned about the Amputee Coalition and the conference and registered to attend.

Although she participated virtually, Cathy is so grateful for having the opportunity to meet so many people in the community. The conference was a way to connect with an added support system of friends that she holds dear.

She shares that the event helped her gain inspiration and build confidence in herself. Today, she is doing things that she never imagined that she could do. During the event, Cathy met her mentor who has helped support her on this new journey. Cathy now serves as an advocate for the community. She is leading a new non-profit as president of the board. She is also volunteering for various committees to help others like her.

The Amputee Coalition is excited to bring together the limb loss and limb difference community in Palm Desert, CA on August 10-13, 2022. Take advantage of the unique opportunity to grow your network of support, learn about new resources, and engage with vendors about innovative prosthetic devices and other technologies. Let National Conference become a transformational experience for you too!

YOUR VOICE MATTERS: The Garden of Advocacy

By Amanda Woodson

The Amputee Coalition strives daily to build a vibrant network of advocates to advance the needs of the 2.1 million Americans living with limb loss and limb difference and the 28 million Americans at risk of experiencing limb loss. We also recognize this population will double by 2050. We believe the time to act is now to ensure support for those living with limb loss and limb difference. Growing your advocacy skills can be likened to growing a garden.

Step 1: Selecting Your Seeds

When growing a garden, you first must select the seeds for which type of plants you would like to grow. Each plant seed requires a different level of effort to ensure the desired outcome. Think of selecting your seeds as selecting your level of advocacy and its required amount of involvement. Are you someone just starting out in advocacy? You can start by joining Amputee Coalition’s quarterly all advocate calls, which are open to the public. Are you someone who would like to devote more time to advocacy? You can complete online training to become a lead advocate by visiting www.amputee-coalition.org/LeadAdvocateTraining. Lead advocates are volunteers who have completed training to build advocacy skills on issues impacting the limb loss and limb difference community. They are committed to developing relationships with their elected officials on behalf of our community as an Amputee Coalition volunteer. Are you someone who desires to advance your advocacy skills to the next level? You can also become a regional ambassador, a seasoned advocate who is looking to mentor new lead advocates and take on a leadership position.

Step 2: Planting your Seeds

After selecting your seeds, the next step is to plant them into the ground. Consider planting seeds as completing tangible steps to begin your advocacy journey. You could begin with completing an action alert by visiting www.votervoice.net/Amputee/campaigns/93803/respond. Action alerts are ways to share your story with the world and your lawmakers. Contact Amputee Coalition’s Government Relations Team to ask questions and learn more about policy issues impacting the limb loss and limb difference community at advocacy@amputee-coalition.org. We would be happy to connect you with other lead advocates and your regional ambassador.

Step 3: Nurturing your Garden

To have a successful garden, you must nurture it and water the plants so they can grow. Similarly, to become a successful advocate, you must take time to practice your advocacy skills. This could mean reaching out to your elected officials with an email, a phone call or an in-person visit, particularly during a congressional recess. Connecting with your lawmakers when they are back home in their districts and state helps to build and strengthen your relationship with them as their constituent.

Liberty Hyde Bailey, an American horticulturist and botanist who co-founded the American Society for Horticultural Science, once said, “A garden requires patient labor and attention. Plants do not grow merely to satisfy ambitions or to fulfill good intentions. They thrive because someone expended effort on them.” Likewise, the garden of advocacy requires the willingness to plant and nurture skills that can lead to becoming an effective advocate.

During Amputee Coalition’s 2022 National Conference, attendees will experience a variety of workshops highlighting ways to develop self‑advocacy skills and to get involved with national initiatives for advocating and advancing policies that support the limb loss and limb difference community.