Cerebral Palsy Research Network Blog

Archive for CP Stories

CP Stories: Brittany Lopez

“Ethan knows he’s different and he’s really happy and content.”


Toddler Ethan Lopez was diagnosed with spastic quadriplegia cerebral palsy (CP) and dystonia at the age of two. Today, his mother Brittany, 31, shares her joy at seeing her son take everything in his stride…

Just like many parents with a young child, Brittany Lopez, and her husband Esteban, juggle demanding full-time jobs with caring for their three-year-old son. 

Yet life for the Lopez family, who live in Austin, Texas, can be more challenging than for most. On top of the usual toddler chaos and antics, they must factor in a multitude of therapies for their son each day.

Little Ethan was first diagnosed with quadriplegia spastic cerebral palsy and dystonia after his parents noticed he was slow to reach his developmental milestones as a baby. The determined toddler can now take a few steps using a walker and his family is working hard to help him progress.  

“Ethan isn’t able to walk or stand independently and while he knows he’s different he’s really happy and content,” explains Brittany. “He’ll likely have his first surgery this year at three or four-years-old but can self-propel his wheelchair, crawl, and sit independently.  He has an adaptive bike and enjoys riding around with his friends. He loves to play, wrestle, and be goofy.”

Prior to his pre-school day, Ethan undergoes therapy and rotates between physical therapy, occupational therapy, and speech therapy four days a week. The family’s day often begins at 5:30 a.m. While Brittany carries out her duties as a corporate controller for veterinary clinics and Esteban goes to work at a mortgage company, Ethan attends an Early Childhood Special Education (ECSE) preschool program in Austin.  In the afternoons, the couple balance work commitments with more care for Ethan and ensure the little boy has a good balance of treatment and free time to play.

“He is into cars and books and a TV show called Puppy Dog Pals,” says Brittany. “He even has a stuffed toy of a little character from the show called Lollie who has a wheelchair. We know life may be challenging for Ethan but being part of the CP Research Network has really offered our family a lifeline. I would encourage anyone in our position to be active in the network. We are doing everything in our power to give him the most fulfilling life – whatever it looks like for him.”

CP Stories: The “Can Do” John Borland

“You can’t expect a group of people to respect you more than you respect yourself.” — John Borland

Retired health inspector John Borland, 68, has fought stigma and the feeling of being underestimated throughout his life with cerebral palsy. Today he shares how a relentless ‘can-do’ approach to living has helped him meet his full potential. 

John Borland with his family
John Borland with his family

John Borland can clearly remember the first time he realized he was ‘different’ from others. 

“I was about two years old,” he says. “The short story is that I was lying on our living room floor playing with my father. I watched him get up from his stomach on to his knees and then on to his feet. I tried several times to do what my father did – to be like him – but each time I fell over. After several tries, I knew I was not the same as others.”  

Around the same time, John’s parents, Samuel and Patricia, sought a diagnosis, learning that their son likely had spastic cerebral palsy and could be ‘slow to develop’.  Under the care of orthopedic surgeons at Hamot Hospital in Erie, PA, he was able to learn to walk. During a time where there was often the assumption that children with cerebral palsy were ‘mentally retarded’ John was also required to take a cognitive test to attend a mainstream elementary school.  

“It was ingrained in me that I was not the same, not as good as able-bodied people,” he says. “I was largely ignored by the other kids in school, and sometimes I was bullied. I had to fight to break that mold to attend college.” 

 John graduated from Edinboro State College (currently Edinboro University of Pennsylvania) in 1974 with a Bachelor of Science in Biology.   

After initially attending graduate school, John was forced to change routes and began to hunt for permanent employment. He found some temporary work but faced many rejections – some he believes stemmed from fear of his disability.   

It hit him hard but he found solace traveling to Alaska with his friend Skip and his family. During the four-month trip, his friends, as they always did, encouraged him to do everything they did – canoeing, hiking, and cross-country skiing.   

“They never looked at me as disabled,” he says. “It made me realize I didn’t want to be marked as exceptional for being disabled. I want to be marked as exceptional. You can’t expect a group of people to respect you more than you respect yourself.”  

Back home in Clarendon, John met with case worker, determined to fight in his corner and who, after five years, found a position with Pennsylvania State government. Throughout his 33-year career, John remained passionate about his work, among other duties, initially conducting health inspections at restaurants and other public facilities. Later as a program specialist, John worked to implement and facilitate drinking water staff training as well as contributing to state and federal  efforts concerning drinking water regulation and facility improvement. John also played a major part in developing Pennsylvania’s storage tank and biosolids programs and with facilitating municipal management of home wastewater systems.  

In his spare time, John embraced his wanderlust, travelling to a total of 43 states throughout the U.S. where he enjoyed adventures hiking, camping, canoeing, skiing or simply taking in the peace of nature. Sadly, he still suffered moments of doubt, even contemplating suicide, and feared he would not find companionship.  

“As a young adult, I couldn’t find acceptance or someone to want to be with me romantically,” he shares. “This grew to be a major source of darkness and trouble for me.” 

With difficulty, John pushed through his depression and worked hard to gain a promotion, relocating to Harrisburg, PA. It was there he was matched with his future wife, Judy, by a dating agency. 

“I forced myself to call her and begin a conversation,” he recalls. “I had to tell her that I was disabled and I figured when I did the call would be over. To my great surprise (as this had never ever happened to me before), she said, “I don’t care. When do you want to get together?” 

The couple became engaged and married in 1990. They have two children, Judy’s son Troy from her previous marriage and Joshua, who was born in 1992. Since then, the family has been blessed with two grandchildren.  

As a passionate contributor to the CP Research Network community, John now wishes to help young people with cerebral palsy to have the confidence to achieve their hopes and dreams. 

He adds: “We need to open the eyes of a great many people so they can see who a disabled individual can truly be and what they can achieve.” 

CP Stories: Why Genetics Matter

“We believe this study will move the needle and help patients and their families.” – Dr. Michael Kruer

As he embarks on a the Cerebral Palsy Research Network’s first publicly funded study into genetic causes of cerebral palsy, Dr. Michael Kruer, Director of the Pediatric Movement Disorders Program at Phoenix Hospital, hopes the landmark research will help transform patient care. 

Working as a dedicated pediatric neurologist, Dr. Michael Kruer is passionate about the young patients in his care and how to improve their treatments and therapies. 

Now, as he launches a three-year study examining how genetic factors connect with a CP diagnosis, he is hopeful the research could lead to better outcomes for many in the CP community. 

“We believe this study will not only move the needle for research but has the potential to impact individual patients and their families,” he tells the CP Research Network.  

Kruer is no stranger to people’s challenges with CP, having dedicated the last ten years to the study of genomics as it relates specifically to the condition. He received the CP Research Network’s first publicly funded (NIH) grant to launch his “Genetics Causes of Cerebral Palsy” study after approaching the network to collaborate on research.  

Five hundred participants and their biological parents will participate at Phoenix Children’s Hospital, AZ, Al DuPont Children’s Hospital, DE, Nationwide Children’s Hospital, OH, Seattle Children’s Hospital, WA, and Children’s Hospital Colorado, CO. 

“The beauty of working with the CP Research Network is it collects information that doctors and therapists enter as they are caring for people with CP at the participating sites,” adds Kruer. “It’s a wealth of information that we’re then able to leverage to try to take the genetics and make sense of it in a way that can impact diagnoses and treatments.”   

The study, which kicked off this month, in unison with CP Awareness Month, will compare the genome (the person’s genetic material and instructions) of people with CP with those of their parents, known as whole-exome sequencing analysis. If a participant with CP has children of their own, then researchers will track changes in the genome of multiple generations of the same family, which will be a first for clinicians. 

Until recently, CP was not known to have a genetic connection. Yet, increasingly research indicates that as many as one in four individuals may have a genetic cause for their CP.  

“Dogma in medicine is hard to change,” admits Kruer. Yet he remains optimistic that perceptions can gradually shift with sound research. Indeed, initial research linking genes to CP is already opening doors to new avenues of treatment for patients. 

“The most cutting-edge genetic technologies are exciting, but it’s only one side of the coin,” he continues. “If you don’t know how that technology relates to a real person and his or her symptoms, what they’ve gone through etc., then I think it’s an incomplete picture.” 

Dr. Kruer will share why genetics matter and detail the specifics of his latest study during a MyCP webinar this evening (Wednesday, March 10) at 8 pm EST. You can register here

If your family is interested in taking part, look for an invitation from your CP clinic at one of the participating sites. We will send you an invitation to our online consent application. Once the family gives their consent, they will receive saliva-based DNA sample collection kits.