Liam is a 9-year-old boy (about to turn 10 in November) who was born with a rare congenital condition called Spina Bifida. Spina Bifida, or SB, is a condition that affects every single part of the body. I was 16 weeks pregnant when I found out that he had this condition. I was told by the doctors that he “would never amount to anything; he won’t walk, won’t talk, won’t eat and abortion is the best choice”. Obviously, I refused to listen to those doctors. Instead of focusing on those words, I knew that I would help Liam prove those doctors wrong.

This story was submitted by the child’s parent exclusively for use by Operation Dez Strong.

Over the past decade, Liam has had a total of 31 surgeries and several other procedures. The majority of these surgeries involved the legs and feet. A “symptom” of SB is club feet, where the feet literally look like golf clubs. He was in and out of casts, foot corrective surgeries, and even Achilles Heel tenotomies, where they would clip the Achilles tendon to stretch out the foot in hopes that it would straighten. Thank God that Liam was never able to feel his feet, even from birth, because that procedure can be incredibly painful.

When Liam was about 4 years old in 2017, he had a foot corrective surgery that went wrong post-operatively, causing his left foot to endure a Grade 4 Staph infection and the bacteria ate all the way down to the bone. I can still remember the smell of dying tissue, seeing the drainage through the cast, and when they opened the cast up on Mother’s Day in the Emergency Room, I was horrified by what I saw. Almost immediately he had multiple surgeries to wash it out and clean it up to the best of their ability. That was the start of the infections that would later result in Liam losing both of his legs.

Things settled down for a few years. However, because of the lack of circulation due to the nerves dying in his legs caused a feeding frenzy for bacteria. It seemed as though he battled infections for months at a time, and these infections would spread in a matter of hours. Between the cellulitis (infection of the skin) and the osteomyelitis (infection of the bone), we were constantly in and out of the hospital, so much so that had I gotten to know most of the ER staff along with staff from a few of the other units.

In 2019, we went to a second hospital to get a different opinion about any remaining options to save Liam’s left leg. This hospital specializes in children with Spina Bifida dealing with club feet. They had performed one more radical surgery to correct Liam’s foot and straighten it. Unfortunately, it was unsuccessful and yet another infection started brewing. So, we had decided that enough was enough and that it was ultimately more humane to amputate. It took an entire year of planning and speaking with other amputees to get Liam and I comfortable with the idea of him losing a foot.

Finally, on 10/26/20, he had a left Syme amputation. We thought that recovery was going well. He was being fit for his very first prosthetic. At Christmas time, he developed a rash over his entire body, and no one could explain what it was. We saw doctor after doctor, tried many medications, but nothing would work. It wasn’t until the end of January 2021 when Liam developed what we thought was another infection. Rather, it was the same infection that he was fighting in October that cost Liam his foot. It was spreading, and the rash was our warning sign that it was turning lethal. This forced me to make the decision to make Liam a left BKA.

After the surgery, Liam went into a depression because we took an entire year to prepare for a foot, but it wasn’t 3 months later that he had to lose more of his leg. After a lot of mental health therapy and physical therapy, Liam started to turn it around and became fond of his new leg. He started to call it “stubby”! The surgical scar couldn’t have looked any better, and, once he was ready, we were admitted into inpatient rehab where he started to learn how to walk on his new prosthetic leg. Of course, we couldn’t have a length of positivity without enduring another round of infections.

Once we thought the war of infections were over, we soon learned that the battle had just begun. I imagine that the bacteria thought that it wasn’t fair that the left leg was getting the brunt of everything, so it was only fair that the right side should share in the bacterial party as well. Liam started developing infections about 6 months later on the right leg in the exact same way, cellulitis and osteomyelitis. In the summer of 2022, Liam had decided that he didn’t want to have to go through all that anymore, and that he wanted the right leg to be amputated as well. We had such positive results from the left leg, I thought “Why not?” We brought it up to his orthopedic surgeon, which of course, was hesitant. We spoke at length with her, his rehabilitation doctor, his prosthetist, and a few other specialists, including his mental health therapist. Everyone agreed that this decision was best for Liam. Two years later, almost to the day, on 10/25/22, Liam went under the knife once again and had his right leg become a BKA.

 The surgery went well, and once the post-op dressings were removed, we thought it was going to be smooth sailing, like the left leg. Boy, were we wrong! His surgical scar started the dehiscence process, meaning that the wound was opening up. We tried everything to stop it, but there was ultimately nothing that could be done. He started to become lethargic on Thanksgiving Day, which told me that the infection was spreading quickly. He had 2 more surgeries; one to clean it out and place a wound vac, and oner to revise the amputation. Luckily, it was only a small revision, and he would still get to keep the majority of his leg.

Liam still struggles with infections and wounds from time to time, but not once has he let his disability define him. He is currently a member of the RHI Jr. Racers competitive wheelchair basketball team. He has also been walking with a walker and learning how to stand with forearm crutches! Liam has continued to amaze me and everyone around him, including his doctors. He may not be “normal” like everyone else, but that’s what makes Liam so special. He is my hero and became my inspiration to help other children by becoming a pediatric nurse at the same hospital that has been taking care of Liam his entire life. He has inspired many people to persevere, regardless of what is going on in their lives. Liam has obliterated every obstacle in his way and still finds a way to smile and laugh every day. He has turned the “no’s” into “yes” and the “he can’t” into “I will”.