Christopher’s health challenges started at birth, with frequent illnesses affecting him from the very beginning. For the first two and a half years of his life, he suffered from selective antibody deficiency, which eventually evolved into a diagnosis of Common Variable Immunodeficiency (CVID) at the age of seven. This diagnosis marked a significant turning point for Jade and Christopher, bringing challenges they had not anticipated. In 2021, additional diagnoses of KAT6B and TNFRSF13B in 2022, making him one of the few in the world with this condition. further complicated Christopher’s health landscape, leaving the family navigating uncharted waters with limited resources and research to guide them.
Jade reflects on the challenge of balancing Christopher’s health needs with the desire for him to have a normal childhood. “He’s always tired, and his body often hurts,” she shares, emphasising the adjustments they’ve made to ensure his safety and well-being. Their home has transformed into a place of heightened cleanliness, with sanitising and careful monitoring of visitors to protect Christopher from potential illness. The family can’t just go to birthday parties or gatherings, they must always be cautious., This is a common theme for those living with an immunodeficiency, reflecting on the profound impact conditions have on immunocompromised peoples day-to-day life.
To maintain a sense of normalcy, Jade has adopted a cautious yet loving approach, framing it as him being a ‘fighting warrior’ rather than telling him he has a disease. This perspective helps Christopher to maintain a sense of innocence about his health while fostering a positive mindset. He believes he is one of the lucky ones, thinking of his hospital visits as a quest where he gets to “retrieve swords” to fight off the germs.
Christopher’s treatment involves regular intravenous immunoglobulin (IVIg) therapy, which can be overwhelming. Each session requires sedation due to the associated trauma of medical procedures. Jade creatively reframes these visits by referring to the treatment as “liquid gold,” emphasising the strength it provides to Christopher’s immune system. By fostering this sense of empowerment, she helps instil a spirit of resilience in her son. Jade emphasises the importance of finding joy in small moments, celebrating the little victories, noting the importance of happiness amidst hardship.
Jade describes her life as a continuous learning experience, with a commitment to creating a safe environment for Christopher without stifling his spirit. With a focus on happiness first, and Christopher’s joy a priority, it leads them to find ways to enjoy life, even within their limitations. They share laughter, tenderness, and lessons through their shared activities, which helps Christopher feel loved and supported.
Discovering the Immune Deficiency Foundation Australia (IDFA) has been crucial for Jade and Christopher. Through the education and support they received, they learned to advocate effectively for Christopher’s needs. Their connection with other families in similar situations has also provided a comforting sense of community. “It’s reassuring to know we are not alone,” Jade reflects.
Jade’s journey has also taught her to trust her instincts as a mother. Advising to always speak up for your child, and knowing your instincts are invaluable, especially when navigating the medical world. Jade recalls how persistent advocacy led to crucial treatments, even when faced with scepticism from others about Christopher’s conditions.
As they navigate this complex journey, Christopher’s resilience and caring spirit inspire Jade daily. She recalls a moment when he comforted her during a difficult time, concerned about her feelings despite his own struggles. Christopher is more worried about everyone else around him, highlighting Christopher’s selflessness that continues to shine through their challenges.
Jade offers a poignant piece of advice for other parents facing similar challenges: “It will get easier. Stay strong and keep fighting for what you believe. Always ensure your child’s voice is heard and trust your instincts as a parent.” She has learned that while they may face hardships, moments of happiness and connection are what truly matter and can brighten their journey.
The story of Christopher serves as a powerful reminder that families can overcome daunting obstacles through love, community, and hope. Jade and Christopher together embrace each day, finding hope and joy in the simple pleasures of life. With the support of organisations like IDFA, families are redefining their journeys, finding strength in shared experiences, and embracing every moment life has to offer.