Penelope continues to make incredible strides in her journey! Thanks to her ongoing physical therapy, she is gaining strength and making noticeable progress in areas like reaching, throwing, and stability. While she's still a little ways from walking the red carpet or running up the Rocky steps, her family is confident that, with time, she will get there.
Penelope’s personality is truly shining through. She has become a constant source of laughter and joy in the family, always having fun and bringing a smile to everyone around her. Her playful spirit is nothing short of contagious, and it’s been a joy to watch her thrive.
October brought a magical experience for the family with a trip to Disney. Penelope loved meeting the Disney Junior characters, the princesses, and watching the Frozen show at Hollywood Studios. The girls also enjoyed their time at the Bibbidi Bobbidi Boutique, and Penelope even ventured onto Guardians of the Galaxy: Cosmic Rewind. While that may have been her last thrill ride, she had an unforgettable time!
On November 22 (Emanuel Syndrome Awareness Day), Penelope’s family wore shirts to raise awareness for Emanuel Syndrome. During the day, Bianca, Penelope's thoughtful big sister, asked if Penelope would always have Emanuel Syndrome, expressing her deep desire to see her sister be able to do everything she can. Bianca’s love and devotion to her sister is a beautiful reminder of the special bond they share.
Penelope’s family is also continuing their advocacy work to improve support for children like Penelope. Over the summer, they had several productive Zoom meetings with local and state politicians, pushing for the inclusion of better after-school programs for children with unique needs in the upcoming state budget. Thanks to the support of the Chive Charities community, their efforts have gained momentum. The 100-mile walk helped generate hundreds of additional signatures for a letter to New York State Governor Kathy Hochul, and they are incredibly grateful for the continued support.
In addition to their advocacy efforts, Penelope’s family has launched a Fund the First page to help make life more accessible as Penelope grows. While they are thankful for the support they’ve received, they are facing increasing challenges with accessibility. Tasks like getting Penelope into the basement family room, using the bathroom/shower, and getting in and out of the car have become increasingly difficult. Despite three years of navigating Medicaid’s bureaucratic processes, they have yet to receive the necessary equipment and resources. Without this support, they can no longer safely lift or transport Penelope.
To help with these challenges, they are reaching out to their community for assistance. If you would like to support Penelope and her family, you can donate through their Fund the First page:
Support Penelope: Help Us Make Life More Accessible
As always, the family is deeply grateful for the love, support, and encouragement they continue to receive.
