The story of Jennifer
Our daughter, Amelia, was diagnosed with CLN1 Batten Disease (neuronal ceroid lipofuscinosis) at 2 years old. Batten Disease is a fatal, neurodegenerative disease with no cure. It is sometimes called childhood dementia.
Amelia is almost 8 years old. She’s had many ups and downs over the years. Within the first six months of her diagnosis, she completely lost the ability to walk, crawl, and sit up on her own. She stopped laughing and smiling. She went completely blind. She has multiple seizures daily and is on several anti-epileptic medications. We had a g-tube placed when she was 4 years old. We now use a wheelchair for Amelia and she requires equipment such as a suction machine, oxygen concentrator, Theravest, cough assist, feeding pump, and pulse oximeter. She requires constant supervision and care. It is definitely not the life we envisioned for our beautiful girl.
Throughout this journey, we try to walk the line between grief for what was lost and what will never be, and what we still have to be thankful for. We have learned not to take a single thing for granted. Amelia isn’t able to tell us she loves us, but when she smiles at us, we feel it.
Amelia is a true rare disease warrior. She is tough, resilient, and deals with more challenges than most of us will ever face in our lifetime. She enjoys listening to Taylor Swift, floating in the hot tub, and going on outdoor adventures when the weather is nice. We spend our days singing and snuggling and doing arts and crafts. Sitting by the fire pit, going to the beach, or walking around the local nature preserve are also family favorites. Amelia is our miracle, and our goal is to give her meaningful experiences, and ensure she’s comfortable and happy.
For more information on CLN1 and the other forms of Batten Disease, you can visit www.BDSRAfoundation.org
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