Planning fun summer activities for our rare disease family
How we cherish moments of happiness and nature despite hardship
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 pulmonary atresia with intact ventricular septum (a rare, congenital heart disease). Planning our summer activities requires careful consideration and a focus on their special needs. One way we have fun as a family is by exploring accessible outdoor activities.
We’ve discovered inclusive parks and nature trails that accommodate children with different abilities. These spaces allow Juju and Serenity to enjoy the beauty of nature while also ensuring their safety and comfort. Seeing their faces light up as they experience the sights and sounds of the outdoors brings us immeasurable joy.
However, we’re always mindful of the difficulties we may encounter during our summer adventures. My husband, Jonathan, faces the daunting task of finding activities that cater to both Juju’s and Serenity’s needs. It can be hard to find places that are equipped to handle medical emergencies or that provide the necessary accommodations for their specific conditions.
Finding laughter despite special needs
Planning and researching accessible venues has become a crucial part of our summer preparations. One particular concern we have is Juju’s seizures. Safety precautions are of utmost importance to us, especially when engaging in outdoor activities. We make sure to have an emergency plan in place, the necessary medications, and a clear understanding of what to do in case of a seizure.
We also inform the people around us about Juju’s condition, ensuring that they’re aware of the appropriate responses and can provide assistance if needed. By taking these precautions, we can enjoy our time as a family while minimizing any potential risks. Despite the uncertainties that come with having children with rare diseases, we’re grateful for every moment of happiness and nature we can experience.
Even if it’s just five minutes of laughter or a gentle breeze on our faces, those small moments become cherished memories. They remind us of the resilience and strength we possess as a family, and they inspire us to make the most of every opportunity for joy and connection. So this summer, we’ll continue to seek out new adventures, explore accessible spaces, and make lasting memories as a family.
We’ll face hardships head-on, knowing that the love and support we have for one another will guide us through any obstacles. Above all, we’ll cherish the moments of happiness and nature, appreciating the beauty that surrounds us and the strength that binds us together.
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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