• Accessing Services
  • Jayden

    When an insurer denied medical equipment for a child with a rare genetic disorder, PHLP stepped in.

    Jayden is a 3-year-old boy diagnosed with MECP2 Duplication Syndrome, a rare genetic neurodevelopmental disorder characterized by low muscle tone, developmental delays, and progressive spasticity. At the suggestion of Jayden’s physical therapist, Jayden’s doctor prescribed him a Multi-Positional Stander, which would allow for increased movement, strengthen Jayden’s hip sockets which remained underdeveloped due to his diagnosis, and allow Jayden to work towards the goal of standing and, ultimately, walking.

    When Jayden’s insurer denied the Stander, his family contacted PHLP for legal help. We worked with his team of health care providers to build a strong case that articulated exactly why Jayden needed the Stander and how it would benefit his overall health and development.  At the hearing, we even brought in Jayden’s Physical Therapist as a witness who spoke in detail about why the Stander was necessary for carrying out Jayden’s treatment plan. The hearing judge agreed with us, overturning the insurer’s denial and approving the Stander for Jayden! He has already received the new equipment (pictured above) and is using it daily to make progress toward his treatment goals.

    Jayden’s family was grateful for the legal support PHLP provided to get Jayden the equipment he needed and was legally entitled to. Recently, Jayden’s mother sent us a heartfelt note about her experience working with PHLP on her son’s case:

    “I am incredibly thankful for our attorney Marissa and Pennsylvania Health Law Project.  Marissa is super quick to respond, and is not only a fantastic empathetic listener, but also knows how to support and fight for clients like us.  She was instrumental in helping us get the EZ Stand Zing Multi-positional Stander.  It took a year and a few hearings to get it, but her perseverance paid off!  She collaborated well with our therapists and prepared us well for the hearing. She was such a great guide and I felt prepared and ready to fight, knowing Marissa was in our corner.  In the end we won the case, and the judge ruled that insurance had no grounds to deny my son this stander!  

    Then, when the insurance chose not to follow through with the judge's order in a timely fashion, she was on top of things and made sure the insurance followed through. Now my son can stand with minimal support, and is learning to take independent steps. When we face other challenges with my sons' insurance, Marissa and the Pennsylvania Health Law Project are the first ones I call.  

    Having two children with medical complexities and disabilities is really tough, but having an ally and an advocate, especially one that is free of charge, gives me peace of mind more than you know.  I cannot thank God enough for Marissa and Pennsylvania Health Law Project.  You have truly made a difference in our lives. I also should add that there is no way we could afford legal help for these battles, and how big a blessing you are!”

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