Cerebral Palsy: Mohamed’s Story

Meet Mohamed

In an apartment building in Syria, a little boy sits by the window, looking out at the other kids playing soccer, riding their bikes and laughing together. “Mom,” he cries, “why can’t I play and run like they do? I just want to have a normal life!”

Muna gets emotional as she recounts the despair her son, Mohamed, felt as a child with limited mobility in a country with few resources to help him. Musa, her husband Faisal, and their three children lived in Syria during the height of the country’s civil war.

In 2011, while Muna was in labor with Mohamed at a Syrian hospital, the building was bombed. There was no electricity, and health care providers and medical supplies were in short supply. Although the family was transferred by ambulance to another hospital in Jordan, at that point, the damage was done: Mohamed sustained a brain injury due to lack of oxygen at birth, which subsequently led to cerebral palsy.

Finding help for Mohamed

Cerebral palsy is a condition that causes difficulty when the brain tries to communicate with muscles for movement. It’s typically caused by a brain injury that occurs either in the womb, at birth or within the first two years of life. Children with cerebral palsy often experience movement disorders, changes in muscle tone, muscles firing too much and/or developmental delays.

In Mohamed’s case, he was impacted in nearly all these ways. In spite of his family’s persistent efforts — traveling throughout the Middle East to try to get him the care he needed — Mohamed relied entirely on Faisal and Muna to help him with activities of daily living and getting around.

Speaking through an interpreter, Muna said: “Mohamed had many surgical operations in Jordan, but still couldn’t walk. I used to take him many places to make him happy, but when he was sitting down, not moving, he was not happy.” The frequent bending and lifting to assist his growing son caused chronic back pain for Faisal that also required him to have surgery.

Persistence pays off

After a multi-step, seven-year application process, the family was able to come to the United States with the help of a nonprofit organization. The move meant starting over professionally for Faisal, a pharmacist, and Muna, a schoolteacher, as they worked toward certification in their fields to be able to work in the U.S. But there was one big bright spot: Children’s Mercy Kansas City could help Mohamed.

“As soon as we arrived here, Mohamed was referred to Children’s Mercy,” Muna said. Starting in the summer of 2023, they worked with several different clinics, including Rehabilitation Medicine, where Maddy Morris, APRN, RN, BSN, CPNP-PC, was his primary provider.

“I love rehab medicine and the idea that we’re there to improve the patient’s quality of life and function,” Maddy shared. “We are there to help them meet their goals and get to their highest potential. I want to partner with them to achieve their goals — and I never say never with these kids, because I’ve seen kids prove everybody wrong [about their capabilities]!”

After a thorough assessment, Maddy recommended that the family see Kathryn Keeler, MD, Chair of the Department of Orthopedic Surgery.

A new plan

“When Dr. Keeler saw Mohamed’s file, she started the investigation from the beginning,” said Muna. “She examined him, did X-rays and tests, and explained that he can’t increase in height or develop until we do an urgent surgery on his tendons to fix his bones in another way.”

That surgery — a bilateral tibial derotational osteotomy and hamstring lengthening — is what Dr. Keeler described as a “single-event, multi-level surgery.” She and her team performed a total of six procedures during the surgery to release some of the tightly banded tendons in Mohamed’s hips, knees and ankles and help with his leg alignment.

“It’s a bigger OR day, bigger recovery, but the benefit is it’s just one time that we have to do this,” explained Dr. Keeler.

“When we met Dr. Keeler, we were so hopeless, and then she decided to make this operation for him,” Muna recalled. “Before the surgery, he was using an electric wheelchair, and he could never move without it. After the surgery, he can walk without the wheelchair. It was a long suffering. But Dr. Keeler and the hospital did a great job.”

Faisal agreed: “We are so grateful and thankful to all those who are working in this hospital and to the administration, the doctors, the nurses — everyone who works there. Whatever we can do cannot return the good things they did for us. Anytime, we are ready and willing to volunteer if Children's Mercy needs anything. After Mohamed finished his surgery, every three months, I go to the Red Cross to donate blood, and we are ready and willing and happy to do that.”

Determination makes dreams come true

Both Maddy and Dr. Keeler give the credit back to Mohamed and his family. “Mohamed is a very driven individual,” said Dr. Keeler. “He pushed himself immediately post-operatively. Just four weeks after surgery, his leg casts came off, and Mohamed was in the gym with his dad, on a treadmill and then a stair stepper.

“His father has been a huge support for Mohamed. People like Faisal make my job easy! When someone is internally motivated AND has the external support and motivation of their family, that’s huge.”

Similarly, Maddy has seen an incredible transformation in Mohamed in the months since his surgery. “When he first came to me, he was very shy,” she recalled. “Now it’s amazing because he smiles, he interacts more with me, tells me about his goals, like playing soccer — it's like a totally different kid. He’s just so proud of himself for what he’s been able to accomplish. He’s a more confident kiddo. It's great to see smiles instead of tears!”

A miraculous transformation

While Mohamed might not become a professional soccer player like his idols, Christian Ronaldo and Lionel Messi, his newfound mobility and the confidence that came with it have reshaped his life tremendously. In his younger years and when he first came to Kansas City, Mohamed struggled with his mental health and found it difficult to make friends because of his disability.

Now, he is excelling in school and finally connecting with other kids the way he’s always dreamed of. “He loves technology and computers...he’s very smart,” Muna said with a smile. “He always shares a good time with his friends, and they love to talk to him because he smiles all the time and loves to help people.”

For the Children’s Mercy team, this is the goal for all kids with neuromuscular conditions like Mohamed’s. “We are just here to support kids with special needs to achieve their highest potential, and Mohamed is a great example of that,” Maddy said. “Now to see him a year and half later, walking, playing soccer, making friends at school — it's a miracle to see his transformation with the support of all his Children’s Mercy teams.”