My name is Suzette James and I have 4 children, 2 of whom are living with CLN2 /Late onset, Atypical Batten Disease. Maya, age 21 was diagnosed at 10 and Xavier, age 17 diagnosed at 9. Maya and Xavier (and our entire family) have been living with the reality of Batten for over half their lives. CLN2 or ceroid lipofuscinosis neuronal is a progressive neurodegenerative disease that affects children. 
Most children develop typically from birth, meeting their milestones. Then begin seizures, loss of motor skills, speech delays, cognitive decline - resulting in death by age 6-12. For the later onset version, like Maya and Xavier, symptoms become apparent by around age 5-7 including gait issues, fine motor, learning differences, speech issues, and for some seizures.
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“I Once Raced a Whippet” by Maya James I once raced a Whippet, as in the dog, I was around 8 years old. And I almost won! I used to love to run. I was the fastest kid on the playground. Well, maybe except for my friend Milan. Running was my thing. But I also loved swinging, jump roping, biking and swimming. I played soccer too, but I didn’t love it. I could catch anyone though and beat them to the other side of the field. Life was good. And then my world started to change. I had a hard time balancing when I walked. I would fall out of the blue. It frightened me. I started having a harder time reading. The words would bounce around on the page in front of me. I sometimes would even hold the book upside down. It was so hard. I didn’t know what was happening to my body or to my world. And then when I thought things couldn’t get any worse, it was as if I fell off a cliff….. I got sick. Just a regular cold, but it hit me hard, right before Christmas. All of Christmas break, I laid on the couch for nearly 2 weeks and when my cold was over, I couldn’t walk on my own any longer. I needed someone or something to hold me up. I was only 10 years old.I was so sad for myself. I didn’t want people to see me or to look at me. It felt like my world was closing in. I tried all different therapies. PT, OT, Speech, acupuncture, Shamanism. Ugh, and turmeric…so much turmeric. You name it, my mom and dad either tried it or dragged me to it. I would get so tired. But I knew I had to fight. Even though I didn’t want to talk about it much, I knew I was in the fight of my life. Fighting for my life. |
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The San Diego Union Tribune: Its Shaken Me to My Core |
Hatch Mag: How to Survive Rare Disease  |
Observer.com: Two Heroes You Can Help Right Now  |
Aquanauts Photography: #FightingForMaya .png)  |
