A letter to Juju, my 7-year-old son with Batten disease

My dear Juju,

Just as a butterfly is inspired by the beauty of a flower, I am inspired by you, my son. Your strength and resilience, despite the challenges you face from late-infantile Batten disease (CLN2 disease), have transformed my perspective on life.

Like a butterfly emerging from its cocoon, you have shown me the power of embracing challenges and finding the bright side of every situation. Your presence in my life has been like a gentle breeze, refreshing me with reminders to appreciate the small victories and find joy in the simple things. Just as a butterfly spreads its wings and brings beauty to the world, you also have that power. Please know you can still dream big like any other child, that you can still be an artist and create beautiful masterpieces that inspire others. Make a difference in the world, even if it’s in your own small way.

Recommended Reading

February 7, 2024 Columns by Cristina Vargas

How a late-infantile Batten disease diagnosis led to advocacy

As your mother, I want you to understand that I do try to see the world through your eyes. I know every day is a struggle when you wake up feeling tired and weak. Simple tasks that used to be easy, like getting dressed or brushing your teeth, now take much longer. I admire how you never let it bring you down and you always have such a bright, vibrant smile. You have taught me to embrace immense joy.

My heart breaks in the moments when the reality of your condition hits you hard, especially when you see your friends running and playing freely and long to join them, but feel restricted by your assistive mobility devices. On tough days like these, I hope you turn to your metaphorical diary to pour out your heart and find solace in the pages, and realize in those reflections that having a disease does not define you. You are more than your illness. You have hopes, dreams, and a spirit that cannot be broken. Despite facing more challenges than others, I know you are determined to live a meaningful life.

I am grateful that you can attend regular classes like other children, and that you have a special teacher along with your school’s physical, occupational, and speech therapists, who understand your needs and help you learn in a way that works for you. Yes, in the challenges you face, you are supported by both them and your friends and family. Every day is a gift, and we want to help you make the most of it, because to us, you’re a superstar! You and I are constantly reminded of the love and support that surrounds us. These people make the difficult days bearable and the good days even sweeter.

My dear son, as I finish writing this letter, I want to remind you that life is a precious gift. It may not always be easy, but it is worth living. I am so proud of your determination to make every moment count.

With all my love,

Mom

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.