Ellisville Student Reaches Milestone by Taking First Independent Steps

October is Disability History and Awareness Month nationally, a time during which the Rockwood School District encourages our schools to provide instruction on disability history, people with disabilities and the disability rights movement. There are approximately 130,000 students with disabilities educated by Missouri public schools, and we value the importance of our schools recognizing the contributions by people with disabilities to our society through school curriculum, assemblies and other school activities.

In September, Rockwood School District parents Stephen and Rebecca Smith witnessed something they thought they might never see.

Their son, Ellisville Elementary third-grader Nathan, taking his first steps all by himself.

“It’s been such a long journey — years of therapy and perseverance,” Rebecca said. “He still uses a walker and, for longer distances, his wheelchair, but those were his very first independent steps. It was incredible. For so long, we didn’t know if Nathan would ever reach this point or if that day would ever come. When it did, it felt like a miracle — pure joy, excitement and gratitude all at once.”

Nathan was born with 13q deletion syndrome, a rare disease caused by missing portions on a person’s chromosome 13. In Nathan, the syndrome has caused him to be missing half of his cerebellum, the portion of the brain that plays a critical role in motor control and cognitive functions.

He is nonverbal, smaller in size than other 8-year-olds and has a difficult time with motor functions that are routine for a neurotypical person.

“He’s such a sweet, joyful and silly kid! He just lights up around people," Rebecca said. "Even though he’s nonverbal, he has this incredible way of connecting — he always makes sure you know what he wants or needs. His favorite thing is when we clap for him. When he meets you he will take your hands and put them together himself. He also loves giving high-fives and fist bumps — it’s his way of saying, ‘hello.’ When he starts bouncing and smiling, his whole face just glows. If you know Nathan, you can’t help but love him.”

Nathan is also a cancer survivor.

Around the time he was 1, doctors discovered Nathan had retinoblastoma – a type of eye cancer – another effect from 13q deletion syndrome. He is in remission but lost vision in one eye.

So his first steps were a significant breakthrough for a student who has been in therapy since he was eight weeks old.

"He has such low muscle tone that walking is really challenging for him,” Rebecca explained. “He can do a few steps, but he doesn’t like to. I think he feels more secure using the walker or holding someone’s hands. He’s still working hard on it, but right now, he’s able to take about five steps on his own — which, in and of itself, is truly a miracle. Nathan’s diagnosis is so rare that doctors were very unsure of his future.Thankfully he has already exceeded all expectations, and we remain hopeful that he will continue to do so.”

Rebecca said countless therapists, paraprofessionals and Rockwood and Special School District staff members have been instrumental to Nathan’s progress over the years, including his Ellisville special education teacher Lindsey Tompkins and Kim Amin, his preschool teacher at the Rockwood Early Childhood Eureka center.

“We just loved Kim — we didn’t want to leave the Rockwood Early Childhood Center because of her,” Rebecca said. “She’s amazing, and we think the world of her. And I have to give a shout-out to the bus drivers who work with Nathan every day, and to the amazing paras — there are just so many wonderful people. We love and appreciate Ellisville and his current teacher, Lindsey Tompkins, who has been so wonderful with him. I’m sure I’m forgetting some, but it’s incredible to see how many people love and support Nathan. We’re so grateful for Rockwood and everyone who’s been part of his journey.”

Nathan also has four older siblings – one at Eureka High, one at Wildwood Middle, one at Fairway Elementary and one who graduated from Eureka last spring and is studying biology and chemistry at Missouri State University.

She wants to enter the medical field, and two of Nathan’s other siblings want to be physical or occupational therapists.

“They are all fiercely protective of Nathan and all special needs children. They’ve seen firsthand all the love and support Nathan has received over the years, and it has truly shaped each of them in their own unique way," Rebecca said. "They have grown to care about the whole special needs community and gotten involved through the Best Buddies program when possible. Their love and support have been so powerful for Nathan on his journey. Two have started learning sign language through the high school in hopes of communicating with him better. It’s even shaped what they plan to study and do in the future to help the special needs community.

"They are kind hardworking kids, and we could not be more proud of them. We are blessed to have amazing extended family near us and awesome friends who have helped and supported us as well. We couldn’t have gotten this far without them. ”