Challenges children may face when growing up with a sick sibling

My oldest daughter balances being a teenager with caring for her siblings

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by Cristina Vargas |

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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 responsibility of caring for her younger siblings, Juju and Serenity, who have serious medical conditions.

Juju, 7, was diagnosed with late-infantile Batten disease (CLN2 disease). This rare and debilitating neurological disorder has greatly impacted Juju’s quality of life, making everyday tasks a challenge. Faith has witnessed firsthand the physical and emotional toll that Batten disease takes on her younger brother. She’s had to witness his struggles, endure trips to the hospital, and help with his daily care, all while trying to navigate her teenage journey.

On top of that, Faith’s newborn sister, Serenity, was born with pulmonary atresia with an intact ventricular septum. This congenital heart defect requires constant medical attention and has added another layer of stress to Faith’s already demanding life.

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Advice to parents of children with late-infantile Batten disease

How we’re supporting Faith

Balancing the needs of both siblings who require constant care and attention has become an overwhelming responsibility for Faith. The emotional toll she endures is immense. She often feels isolated and disconnected from her peers, as her experiences and responsibilities are vastly different from those of her teenage friends.

While her friends are worrying about school, relationships, and social activities, Faith is preoccupied with the well-being of her siblings and the challenges they face. As parents, my partner and I strive to support Faith through these difficult times.

We understand that her role as a caregiver to her siblings can be overwhelming, and we want to ensure that she feels heard, supported, and validated. Open communication is crucial in strengthening our family’s unity. We encourage Faith to express her feelings and concerns, and we actively listen to her without judgment.

We also make it a priority to carve out quality time for Faith and nurture her interests and hobbies. It is essential for her to have moments of respite from her caregiving responsibilities and have the opportunity to just be a teenager.

Whether it’s participating in extracurricular activities, pursuing her passions, or spending time with friends, we encourage her to prioritize self-care and maintain a healthy balance between her responsibilities and personal growth. Additionally, we involve Faith in the decision-making process regarding her siblings’ care. This empowers her and helps her feel included and valued as an important member of our family unit.

As we navigate through these challenging times, we also seek outside support. We have connected with support groups and organizations that specialize in the care of people with Batten disease and pulmonary atresia. These resources provide us with a network of folks who understand our unique circumstances and can offer guidance and empathy.

The battles that Faith faces as a teenager are far from ordinary. The stress and seclusion she endures while caring for her siblings is a tremendous burden to bear. However, by fostering open communication, prioritizing self-care, and seeking outside support, we strive to create an environment where Faith feels supported, loved, and understood.

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.


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