Finding strength and resilience through the trials of Batten disease

How can someone maintain a clear vision of their goals when navigating a whirlwind of emotions and striving to be the best mother, wife, and person possible?

Life has a unique way of throwing unexpected challenges at us, much like the sudden craving for a sweet treat. Our smiles can mask a host of hidden emotions, concealing our pain. This pain, however, can be a powerful source of strength and resilience that propels us forward.

My journey as a parent has been far from easy since my son, Juju, was diagnosed with late-infantile Batten disease (CLN2 disease). My life is akin to a roller coaster; just when I feel I’m on an upward trajectory, I suddenly plummet down a steep hill. The crucial lesson here is perseverance. I don’t stay down, but continue to push forward and refuse to give up.

It’s all about resilience and the unwavering desire to keep that inner fire alive. This driving force is ingrained in all of us, pushing us to face and conquer our deepest fears. Life presents us with numerous challenges, and the beauty is that we learn something new every day.

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Finding my inner strength

At one point, I felt like life had thrown me all the lemons I could handle, but the reality was even more complex.

Juju’s diagnosis of Batten disease was the last thing I expected — the bittersweet icing on a very challenging cake. It was not the kind of dessert I’d envisioned when I yearned for tranquility. Watching my son lose his ability to walk was heartbreaking, and the severity of his seizures was terrifying.

Thankfully, he began enzyme replacement therapy and started receiving infusions of synthetic TPP1 enzymes, which has significantly improved his quality of life. However, had he been diagnosed earlier, many of the challenges we’ve faced might have been mitigated.

The Batten disease community urgently needs more therapeutic options. Yet in the face of adversity, there is hope; a brighter future awaits. Life has granted me the perspective needed to see situations as a glass half full. I had a choice: to push onward and remain strong or to succumb to despair. My decision was clear: I chose strength. I aim to empower others within my community and drive meaningful change.

Juju’s rare disease diagnosis has not been a curse, but rather a blessing in disguise. It has provided me the opportunity to amplify my voice and become a more passionate advocate for my children. I can now help others find their voices as well, inspiring and supporting those who need it.

So, when you look in the mirror, do you see strength or struggle? It’s entirely OK to feel sorrow; we must embrace all our emotions, good and bad.

I challenge you to a week of positivity. Whenever a negative thought arises, consciously replace it with a constructive perspective on the situation. We are the masters of our minds, and I believe the rare disease community is filled with individuals who can harness their mental strength.

Science is evolving, bringing more advocacy, hope, determination, and change. These elements combine to forge a path toward real transformation in our lives. Together, we can make a difference for our loved ones with Batten disease.

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.