Help Amelia Fight Batten Disease CLN1

Jessica Bevelacqua is organizing this fundraiser on behalf of Philip Palermo.

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Dear friends, family, and compassionate individuals,

Our beloved niece, Amelia, is a medically fragile child who was diagnosed with CLN1 Batten Disease, a rare and devastating genetic disorder. Batten Disease is an neurodegenerative condition that affects only a handful of children worldwide.

Amelia's journey began when she was just a toddler. At the age of two, her life took an unimaginable turn when she started experiencing seizures, loss of motor skills, and a steep decline in cognitive abilities. After numerous medical appointments, tests, and consultations, the heartbreaking diagnosis of Batten Disease was confirmed.

This disease is relentless and cruel, robbing our sweet Amelia of her ability to walk, talk, eat, and even see. It is a devastating reality for our family as we watch our precious girl endure unimaginable suffering. Despite the relentless challenges she faces every day, Amelia's spirit remains strong, and her smile continues to light up our lives.

Amelia's parents, Jennifer and Philip, are doing everything in their power to provide her with the best possible care and ensure her comfort and happiness. This includes round-the-clock medical attention, specialized therapies, and adaptive equipment to make her life as comfortable and enjoyable as possible.

However, the costs associated with Amelia's care are astronomical. That's why we've created this GoFundMe campaign, with the hope that the kindness and generosity of our community and beyond will help them continue providing the care and support Amelia needs.

Funds will be used for ongoing medical treatments, medications, and specialized equipment that are crucial for Amelia's comfort and well-being. Adapting their home and van to accommodate Amelia's needs is essential.

No donation is too small, and every dollar makes a difference in Amelia's life. Your generosity will help us alleviate the financial burden of caring for a child with a rare and debilitating disease.

Her parents are immensely grateful for your support, love, and prayers during this challenging journey. Your kindness gives us hope and allows us to focus on what truly matters: providing Amelia with the best possible life filled with love and care.

Please share this GoFundMe campaign with your friends, family, and networks to help us reach our goal and give Amelia the best chance at a comfortable and fulfilling life despite the challenges she faces. Together, we can make a profound difference in Amelia's life.

Thank you from the bottom of our hearts for being a part of Amelia's journey and helping us fight Batten Disease with unwavering determination and hope. NEVER GIVE UP!