Kailyn is almost 10 years old! She was diagnosed after experiencing some learning difficulties in kindergarten.

She is a strong, hardheaded, and sweet little firecracker! She loves music, being around people, going to school, and snuggles!

"Johannes is 4 years old and was diagnosed with CLN1 in March of 2017, after he started with hypertonus and lost his ability to walk. He is a sweet little boy and has a great love of his parents and my family. He loves to swim, enjoys cuddling and going to kindergarten."

"Born in Ethiopia and found in a ditch on the side of the road at age 1 (after which he joined his forever family, the Crooks Family) Tegen faced more challenges in his first year than most face in a lifetime. Now, Tegen is fighting CLN1 Batten Disease. He is now once again fighting for his life! This beautiful warrior battles Batten with incredible inner strength and pure love. He is the most adored hero of the Crooks family!"

"Gideon was diagnosed with batten disease October 2019 at the age of two. Over the next year he would experience changes in his vision, motor abilities and requires a g-tube to meet his nutritional needs. Gideon loves the outdoors and his family. He has a genuine smile and a love for life."

"Jayline was diagnosed with Batten disease in 2017. She is now 4 years old, and is unable to walk, talk or eat due to this disease. She has always fought everything this disease has thrown at her. She may not have won every time, but never gave up. She's a fighter!"

"Ryker is eight years old and has CLN. He loves to listen to music. go on rides, and be around his friends and family, the more the merrier and be around his friends and family, the more the merrier"

"Madelyn is 5 years old and she was diagnosed with Lennox-Gastaut Syndrome in April 2018 and diagnosed with CLN1 in April 2019. She has lost her ability to walk, talk and eat by mouth. She has anywhere from 10-100 seizures a day. She loves Trolls and Secret Life of Pets, her little brother and his Basset Hound puppy!"

"Molly is 11 years old and was diagnosed on 14th May 2019 after 3 years of uncontrollable epilepsy and regression in all areas. Her symptoms started around age 6. She has now lost her sight and almost all her mobility. She is now starting to become incontinent and can only say sentences of around 2 to 3 words. She was a lively, chatty little girl who loved to climb, sing, dance and ride her scooter. Unfortunately, all that has gone now."

"Connor was the ultimate Superman fan! He was beautiful, infinitely kindhearted, a true adventurer and a life teacher.

CLN1 took his life on 3/06/2019 at just 5 years old.

He traded his cape for wings."

"James was diagnosed with CLN1 at 22 months. He lives in the UK. He enjoys going for walks and listening to stories. He loves spending time with his dog and laughs when he hears his sisters are in trouble!"

"Garrett is 10 years old and was diagnosed with CLN1 at age 4. When Garrett was younger, he loved to play with trains, wrestle with Daddy and his brother and loved cookies. Now he enjoys snuggles, listening to music and yelling out to make a point! Garrett is so strong as he continues to battle Batten disease."

"Haley loves music and all things unicorn. She just turned 11 in August. She is blind, suffers from dementia and hallucinations, and is cognitively impaired. She is extremely happy and is a fighter. Her spirit inspires the rest of us to live life to the fullest."

"My son, Nikita, is 5 and my daughter, Ksenia, is 3. My son was diagnosed at 1.5 years old, and my daughter was already 5 months old... And she had the same diagnosis. They both are g-tube fed now. The disease is very progressed already. We are from Estonia, and we are the only ones with CLN1 in Estonia."

"Cassidy is 7 and is loved by her family. She loves when other kids are around, and she loves when her Daddy plays with her. She loves music and to go on rides in her chair, especially over bumps."

My daughter Mya has CLN1 Batten disease. She just turned 12 this October. She is such a warrior! Batten has taken so much from her. She continues to smile and love her life, and the people in it no matter what!

Oscar will be 9 yrs old on November 15th. We were diagnosed in February 2020 with CLN1 Batten Disease after a couple of years of being misdiagnosed. Oscar lost his vision at 6, so its been a long battel getting to the bottom of it since then. Oscar is the most kind and courageous little boy, nothing phases him and he just keeps going. He has a huge passion for motorbikes, police cars, and helicopters.

Amelia is 3 years old. She was diagnosed with CLN1 in June of 2019, after having seizures, vision problems and losing the ability to walk. She is a strong little girl with so much persistence and determination! She loves ice cream, snuggles, silly noises, and relaxing in the hot tub.

Our son, Stijn, is 4 years old. He has lost most mobility and suffers from seizures. We love him very much.

Lili is 13 years old and was diagnosed with late onset CLN1 January of 2017 when she was 9 and a half. Lily started losing her sight when she was 5 and a half and started showing signs of regression around age 9.

She enjoys music, listening to movies and stories and playing with her kitchen and dolls.

Taylor loved to sing, dance and hug her sweet dog, Sunny.

She never let Batten disease steal her joy and taught us all to see the world in a different way. She accomplished big things in a small amount of time leaving a legacy for her family and others.

Kailyn is almost 10 years old! She was diagnosed after experiencing some learning difficulties in kindergarten.

She is a strong, hardheaded, and sweet little firecracker! She loves music, being around people, going to school, and snuggles!

"Lillianne is 3 years old and was diagnosed with CLN1 when she was just 22 months old. Since then she has developed painful muscle spasms, loss of vision and all motor abilities, had a feeding tube placed, and began having seizures. She has a pink chair that we call her Barbie car! She loves cuddling and listening to the people around her talk!"