Columns

My precious son, Juju, took a significant step in his life recently when he started second grade. Earlier this year, Juju became an older brother when my daughter, Serenity, was born with a congenital heart defect called pulmonary atresia. Between this new role, more responsibilities at school, and…

As the mother of a child with late-infantile Batten disease (CLN2 disease), I find myself on a journey that is both heart-wrenching and illuminating. Each day presents unique challenges, and while the emotional toll can be overwhelming, I’ve learned the importance of not allowing those emotions to overshadow my…

My husband and I are parents to two children with rare diseases: CLN2 disease, also known as late-infantile Batten disease, and pulmonary atresia with intact ventricular septum (PA/IVS), a rare, congenital heart disease. We also have a healthy teenage daughter. My vision is to create an ideal temporary…

Caring for my 7-year-old son, Juju, who has late-infantile Batten disease (CLN2 disease), is a journey filled with challenges and emotional ups and downs. As a mother, the responsibilities can sometimes feel overwhelming, but I constantly remind myself that I am more than just a caregiver. In this column,…

Summer is a time for fun and relaxation, and my family is determined to make the most of it, despite the challenges we face. We have two children with rare diseases: Juju, who has CLN2 disease (also known as late-infantile Batten disease), and Serenity, who has…

Being a teenager is a challenging phase of life with its own unique struggles and complexities. However, my daughter Faith’s battles go far beyond common adolescent concerns. Not only is Faith dealing with the stress and seclusion that often come with this period, but she’s also grappling with the immense…

As a parent who battled hard to get my son, Juju, diagnosed with late-infantile Batten disease (CLN2 disease), I’m familiar with advocacy. Our family’s journey has revealed the importance of spreading awareness about Batten disease and the urgent need to find a cure for all children affected…

In today’s fast-paced world, maintaining a strong and healthy marriage can be challenging. It’s even more difficult when the complexities of raising children with medical conditions are added to the mix. Our daughter, Serenity, battles a heart defect known as pulmonary atresia, and our son, Juju, has…

Raising two children with rare health conditions has presented me with a multitude of obstacles to overcome. Juju, my 7-year-old son, battles Batten disease (specifically, CLN2 disease), while my 1-month-old daughter, Serenity, has pulmonary atresia, a congenital heart defect. By sharing my experiences, I hope to bring attention…

As a parent of a child with late-infantile Batten (CLN2) disease, I’ve found it’s important to prioritize not only their physical care, but also their mental well-being. Coping with the challenges of this rare genetic disorder can be overwhelming, but several tips and strategies can help create space…