Sharing insights on Angelman syndrome, guided by personal initiative
In the picturesque municipality of Bisingen, a mother named Marisa Wexler shares her journey of raising a 13-year-old daughter named Juliana, who lives with Angelman syndrome. Juliana, who is nonverbal, communicates in her unique and beautiful way, bringing joy to those around her.
Marisa's personal blog and her column at Angelman Syndrome News offer a glimpse into their daily life. The content on Angelman Syndrome News, however, does not provide medical advice, diagnosis, or treatment. It is always essential to seek professional medical advice before making any decisions regarding a medical condition.
Every day is not sunshine in living with a rare disease. Angelman syndrome, a neurogenetic disease that affects about 1 out of 15,000 people, changes how a person's body receives information. Yet, Marisa takes a different approach to presenting their rare lifestyle, focusing on the positive aspects and aiming to educate others about the disease on her own terms.
Marisa's columns highlight the playful interactions between Juliana and her sister, Jessa, and the love and support the family receives from friends and family who understand the obstacles and challenges they face living with Angelman syndrome. Juliana's smile, which lights up the room, is a testament to the resilience and joy that can be found even in the face of adversity.
Strangers often give Juliana odd stares, and it can be difficult to explain Angelman syndrome to them. Yet, Marisa does not want people to feel sorry for Juliana or herself. Instead, she finds that kindness can emerge from interactions about Juliana with strangers.
Marisa's approach to sharing their story is not about seeking pity, but about fostering understanding and empathy. She does not usually discuss Juliana's bad days when explaining Angelman syndrome to strangers. Instead, she focuses on the joy and love that Juliana brings to their lives.
For more information about Marisa's journey and insights into life with Angelman syndrome, you can visit her personal blog and her column at Angelman Syndrome News. Through her words, Marisa aims to make the world a more understanding and inclusive place for those living with rare diseases.
