Nelson's Story

Meet The Gladstone Family!

We are the Gladstone Family from Albury, NSW, Australia. I’m Tenille, and my husband is Ben. Our family includes our eldest daughter Peighton, who has Alagille Syndrome (ALGS), and her younger sister Harper.

 

Peighton’s journey with ALGS began early, diagnosed at just 6 weeks old. Her initial symptoms included jaundice, which led to double phototherapy. After persistent concerns, genetic testing revealed a deletion of Chromosome 20 /JAG 1 gene, not inherited from either of us.The road to diagnosis was challenging. Initially, doctors attributed her symptoms to common newborn issues. However, as jaundice persisted and liver function tests showed abnormalities, further investigation became necessary. It took several weeks of consultations, including with specialists at the Royal Children’s Hospital in Melbourne, before the genetic test provided clarity.

 

Before Peighton’s diagnosis, we knew nothing about ALGS. The news was overwhelming and initially difficult to comprehend. We immersed ourselves in research, reaching out to medical professionals and connecting with support groups. The information we found varied, but provided a deeper understanding of what lay ahead. The first few months after diagnosis were intense. We juggled numerous medical appointments, adjusting to a new routine of medications and dietary needs and the unknown with medical procedures which added to the emotional strain of our new reality. Balancing Peighton’s needs with everyday life presented financial and emotional challenges. Ben and I had to make adjustments to our work schedules to accommodate her frequent medical visits and ensure she received the necessary care. It was a period of immense learning and adaptation for our entire family. Peighton’s symptoms with ALGS predominantly are chronic liver problems and cardiac issues. Despite these challenges, her resilience and infectious spirit light up our lives. She’s a beacon of joy, always eager to explore new hobbies such as Soccer and Drama.

 

Peighton’s journey with ALGS has shaped our family in unexpected ways. It’s taught us to cherish each moment and celebrate every small victory. While it’s presented its challenges, navigating Peighton’s care has strengthened our bonds and highlighted the importance of community support. To newly diagnosed families, we offer reassurance and advice based on our journey. Embrace your child’s uniqueness and seek support from medical professionals and support networks. Each step forward, no matter how small, is a victory worth celebrating. Our involvement with the ALGS community has been transformative. Connecting with other families facing similar challenges has provided invaluable support and understanding. It’s a community bonded by shared experiences and a collective hope for better treatments and ultimately a cure.

 

Looking ahead, our hopes for the future are anchored in advancements in medical research and improved treatments for ALGS. We dream of a world where Peighton and others like her can live without the daily challenges imposed by this syndrome. Supporting Alagille Syndrome awareness and organizations like the ALGSA is crucial. It’s about raising awareness, advocating for research funding, and ensuring that families facing ALGS receive the support they need. Our family’s story is one of love, resilience, and unwavering support. Together, we navigate the complexities of ALGS, finding strength in each other and embracing the journey with hope and determination.

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