Young Boy Living Life to the Fullest Through UCP

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United Cerebral Palsy of Central Arizona Connects with Young Family to

Make Full Use of Resources in Their Journey with the Disability  

PHOENIX –  The story of Benjamin (Benji) Aguilar has been interwoven with United Cerebral Palsy of Central Arizona (UCP) for over three years. The organization provides a level of support and love in the likeness of family. In every step since connecting with the local nonprofit, Benji has proven time and again that his strength, coupled with UCP resources, continues to result in significant milestones.

When Benji joined the world in June 2016, he was a seemingly healthy newborn. However, after one week at home, his mother, Maricarmen Aguilar, realized something wasn’t quite right: “Benji wouldn’t sleep through the night. He cried all the time. And everyone—doctors, family and friends—tried to tell me it was normal. I knew in my heart, as his mother, that they were wrong.”

His first pediatric checkup, just one week after his birth, was when the pediatrician realized the circumference of Benji’s head had not grown as expected. After days of specialist appointments, a subsequent brain scan painted a clearer picture: He had congenital cytomegalovirus (CMV), the most common infectious cause of birth defects in the United States. About 1 in 5 babies with congenital CMV infection will have birth defects or other long-term health problems.

The CMV caused Benji to develop cerebral palsy. He was also needing treatment with microcephaly, a condition where the head (circumference) is smaller than normal, as well as schizencephaly, a developmental birth defect characterized by abnormal slits or clefts in the cerebral hemispheres of the brain.

Following the diagnosis, the Aguilar family moved from Dickinson, North Dakota to Phoenix when Benji was 3 months old, to be closer to specialists and programs. After the move, the family found UCP and the amazing programs it offers, which helped immensely with Benji ’s development. Through the dedication of Diana Thies and Brittney Dichraff at UCP, Benji has improved by leaps and bounds in performing daily functions. He is now able to speak, something the family never thought possible before finding UCP. 

“It’s a privilege and an honor to be a part of a life-changing story, like Benji’s,” said Brenda Hanserd, CEO of UCP of Central Arizona. “The therapy and support that we offer at UCP make a tremendous difference in the lives of the families we serve. Benji’s story is one of a hero, and a signal to families struggling with life-altering disabilities to utilize the resources offered by UCP.”

Maricarmen couldn’t agree more, stating, “UCP is family; I couldn’t imagine our journey without them. Benji’s development through its physical and speech therapy programs have made achieving milestones—such as speaking—a reality. After 3 1/2 years with them, we wouldn’t have changed a thing about our journey.”

“UCP has always been so helpful in finding programs and ways to better serve Benji, and I will be forever grateful for all they have done,” she added. “My family has counted on them for years, and will continue to for years to come.”

Benji is currently enrolled in a local school through the use of online learning. This has been made possible thanks to the programs offered by UCP. His physical and speech therapists come to UCP to work with him, and this is just the beginning of Benji’s story.  Benji will be able to reach new heights with UCP’s help.

Since embarking on a journey with UCP, Maricarmen created a podcast, “Mi Pequeno Con Capa,” where she hopes to learn, share and grow together with the community affected by similar disabilities and advocate for education. Her little hero achieving incredible feats provides her the strength to constantly move forward. Overall, she hopes to provide an extension of the support offered by UCP to her listeners.

Since 1952, United Cerebral Palsy of Central Arizona continues to prove it is more than the name. With an array of specialists and experts in the field, UCP impacts the lives of more than 3,000 differently abled people each year, with the highest quality of care. To learn more about the services, events or how to help, head to ucpofcentralaz.org.

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