Liam R New Jersey Elementary Honor Choir

"It was one of the happiest times: to see him sharing experiences with other kids with disabilities and really connecting with them."

Liam, A Regular Dude in a Power Wheel Chair

Liam Rust’s dad, William, describes his 10-year-old son as a “regular dude in a power chair.”

Liam is more than a regular dude. He has an IQ of 143. He won a place in an art exhibit in his county of Sussex, N.J. He was one of two fourth graders in Sussex County selected to display their work at the Educators of New Jersey 2013 Youth Art Month State Exhibit held at the Statehouse in Trenton, and Liam was one of 40 students statewide to win a spot by audition in the prestigious New Jersey Elementary Honor Choir performing in the Spring of 2013. He is a top-performing fourth-grade student at Helen Morgan School in Sparta.

Liam was also born with Spinal Muscular Atrophy (SMA) Type II, a rare genetic disorder that affects 8 in 100,000 live births and 1 in 6000 to 10,000 children worldwide. Because he has SMA Type II, Liam does not have use of his legs and has limited use of his arms.

Liam in a hospital bedSMA affects the motor neurons located in the spinal cord which control the voluntary muscles needed to walk, to control the head and neck, along with breathing and swallowing. While most children with SMA do not live past the age of 10, children with SMA Type II have a higher life expectancy and can live full adult lives.

In 2011 Liam’s health took a harrowing turn. His low muscle tone led to a curvature of the spine so severe, Liam was in constant pain and had to wear a body jacket to help keep his spine in place. His parents say they were in a panic, first over Liam’s severe pain and then over the prospect of the required spinal surgery. Liam says he too was afraid.

Dr. Samuel J. Laufer, Chief of Pediatric Orthopedics at Robert Wood Johnson University Hospital, helped allay the Rust family’s fear with his honesty and optimism, says Mr. Rust. Dr. Laufer performed a 7-hour spinal fusion surgery in July 2011 that Liam refers to as the “big ouch.” The surgery was so successful it changed Liam’s life.

“I was pretty scared. I was kind of worried,” says Liam about his days leading up to the surgery. “But after I recovered from the surgery and got into therapy it was actually fun. It was just a big ouch,” says Liam.

Liam says bonding with other patients and assembling Bionicle® models with his roommate lifted his spirits during his recovery. “The experience at Children’s Specialized helped me to see what other people have and that I wasn’t really having the worst time. I realized my situation wasn’t really bad,” adds Liam.

Liam in a hospital bedMr. Rust adds, “Without sounding corny, Dr. Lawler and Children’s Specialized Hospital have performed a miracle in Liam’s life. Liam can sit upright in a chair today without any assistance and doesn’t have to contend with the painful skin ulcerations he had prior to the surgery. Another benefit of being at Children’s Specialized was the seamless transition from the surgery at Bristol-Myers Squibb Children’s Hospital to therapy at PSE&G Children’s Specialized Hospital. It helped my son gain a faster and stronger recovery.”

Mr. Rust also credits Children’s Specialized Hospital with helping Liam acquire a power chair that gives him even more mobility. Liam’s old wheel chair was being held together by duct tape. His parents had been appealing to their health insurance carrier for several years to cover the costs of a new chair, to no avail. Following Liam’s surgery, Children’s Specialized Hospital and its Foundation stepped in to assist and in July of 2012, Liam had a new power chair.

Liam’s Permobil M300 power chair has elevated him to new heights, literally. The chair’s height can be adjusted, it tilts, has headlights and can travel at speeds of up to six miles per hour. “It’s great to have a view of the world from above the waist and to be moving so fast that people have to catch up with me instead of me catching up with them. But my favorite part is the headlights. Now I can go out at night – to the lake by my house – I love anticipating the night.”

Twenty-one months after his initial surgery, Liam was admitted to PSEG Children’s Specialized Hospital for therapy following a bout with Respiratory Syncytial Virus (RSV), pneumonia and bronchiolitis. For people with SMA, it is difficult to fully recover from a respiratory illness. In Liam’s case, he had to return to PSEG Children’s Specialized Hospital for two-weeks of in-patient therapy to regain his strength. “Today I am stronger than I ever was. I can lift objects up to three pounds. And that’s usually not the case when someone with SMA has an upper respiratory infection. It makes you weaker and it’s usually not reversable, but I am getting stronger. Children’s Specialized Hospital helped me defy the odds,” says Liam.

“It was even more fun. I made new friends. The GetWellNetwork® was impressive. I read about RSV and learned a lot about what I was going through. My roommate had type 1 diabetes and I used the GetWellNetwork® to read about diabetes,” says Liam. My friends from Children’s Specialized and I would hang out in the recreation room. My friends from school would face time me and update me on things, too. I watched movies, played Super Mario, and I wrote a note to my physical therapist Erin to say ‘thanks.’ It was a whole new experience.” Liam says.

Liam and his dad say the hardest part was leaving Children’s Specialized Hospital, especially the second time around after Liam bonded with the other children there. “It was really gut-wrenching for me as a parent to see how much Children’s Specialized meant to Liam. It was one of the happiest times: to see him sharing experiences with other kids with disabilities and really connecting with them. The peer to peer interaction has helped take Liam’s progress to a whole new level.”