Jill Strauss’s journey as a mother to her daughter, Vada, is a powerful story of resilience, love, and determination. From the moment Vada was born, Jill knew something wasn’t quite right. At just five months old, Vada's medical challenges became apparent, and Jill embarked on a search for answers. This search led her down many paths, filled with medical tests, specialists, and countless hours spent researching her daughter’s symptoms.
It wasn’t until later that the mystery was finally solved when Vada underwent a microarray test, which confirmed that she had 22q deletion syndrome. For Jill, learning that Vada had 22q deletion syndrome was a bittersweet moment — while it provided a diagnosis and an explanation for many of the challenges Vada had faced, it also marked the beginning of an entirely new journey. It meant navigating the complexities of the condition, understanding its many facets, and finding support and resources for both Vada and herself.
Throughout this journey, Jill has faced numerous obstacles. One of the most significant challenges has been Vada’s psychogenic polydipsia — a condition that causes her to drink excessive amounts of water, which can lead to serious health risks if not carefully managed. Along with this, Vada has a heart defect that requires ongoing monitoring and care. Sensory challenges have also been a part of Vada’s daily life, affecting everything from her ability to process certain textures and sounds to her response to various sensory inputs in her environment.
Being a “22q mom” isn’t always easy, and Jill has openly shared her experiences to help others understand the reality of living with a child who has such a rare genetic condition. For Jill, it's not just about the medical journey — it’s about understanding the emotional and psychological toll these challenges can take. It's about finding strength in the face of uncertainty, advocating fiercely for her daughter, and creating a supportive environment that allows Vada to thrive despite the many hurdles she faces.
Through it all, Jill has learned that being a “22q mom” means being adaptable, resourceful, and incredibly patient. She’s learned to celebrate Vada’s victories, no matter how small, and to embrace the beauty and joy that her daughter brings into the world, even on the tough days. Jill’s openness about her journey serves as a beacon for other families facing similar challenges, offering them a sense of community, hope, and understanding.
For Jill, the journey is ongoing, but every step is a testament to the deep love she has for her daughter and her unwavering commitment to helping Vada live her best life.
This episode was recorded on May 26, 2023
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Within this episode we discussed:
Speech delay - apraxia
Extreme Thirst - Psychogenic polydipsia
McMaster Children's Hospital Ontario Canada
Sodium levels
Heart defect - bicuspid aortic valve
Mental health, anxiety, OCD and sensory
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