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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…
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…
Have you ever had the perplexing experience of opening a book and seeing it blank? The pages should include some relevant material, but all that’s present is emptiness. I experienced that sense of bewilderment and ambiguity when at last I realized the truth about what my son, Juju, was facing.
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