Patient Story: Monica

For thirteen-year-old Monica, going to medical appointments often carried some risks. Instead of a wheelchair, Monica would arrive in a child’s stroller she could barely fit into.  

“Monica has a wheelchair she uses for school. We have transportation for her to get to school and the wheelchair fits into that vehicle,” shared Monica’s mom, Delmy. “But that wheelchair is too big to fit into our car.” 

Purchasing a new wheelchair out of pocket, or upgrading their car were not viable options for the family. “We don’t want to miss our appointments, so the only way was for Monica to go in the stroller. The stroller is designed for a young child, it’s not safe for her,” Delmy added.  

On a visit to see Hana Azizi, MD, Monica’s family shared their situation with the Weinberg Family Cerebral Palsy Center (WFCPC) Care & Outreach Coordinator Jennifer Pimentel. Jennifer helps the WFCPC’s families coordinate their care and connect to resources in the community. “Monica’s mom told me they were desperate to get a new wheelchair to transport Monica in a safe way to appointments or just to go out in the community,” said Jennifer. “They couldn’t visit friends and family or go out because it was not safe or comfortable for Monica to be in the stroller.”  

Jennifer set about to find resources to help the family. She reached out to David Zabell, OTL, ATP at the Seating and Mobility Clinic for assistance and coordinated an evaluation for Monica’s family. The family was still very anxious while working through the evaluation process. “Monica has complex medical needs. Besides coming in for the evaluation and fittings, she had a lot of medical appointments. All that time, she was still using the stroller,” explained Jennifer. “What’s more, we still had to tackle our biggest hurdle, which was how to fund the wheelchair. Despite the family’s many appeals, their insurance had denied them another wheelchair.”  

During that time, Jennifer connected with different partners and resources in the community. One organization had recently contacted the WFCPC offering financial assistance to families living with cerebral palsy. CP Extension is a newly established non-profit aiming to improve access to care for families living with cerebral palsy. Jennifer presented the situation to CP Extension, then for the next months, she worked with founders Justine Witzke and Kathleen Scheld to support the procurement of Monica’s new wheelchair.  

“There were many meetings, phone calls and emails between all the different parties involved: myself, CP Extension, David, Monica’s family, and the wheelchair vendor,” said Jennifer. “We worked through numerous forms, calculations, and fittings to determine not just the right chair for Monica and her family, but also how to pay for it and how to deliver it.” Then, seven months after Monica first met Jennifer, a new chair that could fit in the family’s car to safely transport her to medical appointments and out in the community was finally ready for pickup. 

Delmy is relieved and grateful that Monica can now travel safely to her appointments. “I never imagined to receive this kind of support. The team worked so hard and so closely with us. They have made such a huge impact to Monica’s life, to our lives as caregivers. I’m so grateful for everyone’s efforts.” 

“CP Extension was founded in order to help improve access to care for folks with CP and acknowledge the commitments of their families - Monica's story perfectly exemplifies the impact we hoped to make. With the help of our generous donors, we now have had the incredible privilege to work with the dedicated team at the Weinberg Family Cerebral Palsy Center and to play this small part in Monica's journey," shared Justine Witzke, PhD, MPH, Co-founder & President, CP Extension.

Today, Monica’s family can bring her to appointments safely, and she is enjoying more time with family and friends. Since then, the WFCPC and CP Extension completed their second case of assistance, this time for a family needing transportation for a complex procedure. The WFCPC is incredibly grateful and honored to work with CP Extension on their first ever grant, and to be the only organization to have worked with them on more than one grant. We know, there will be more to come! 

Learn more about CP Extension.

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