Background
In 2008, in an orphanage in Addis Ababa, Ethiopia, my perfect six-month old daughter was placed in my arms. I remember whispering to her that our life together would be a most amazing journey. I knew that she would move mountains. But by the time she was three, I could tell something wasn’t quite right. She couldn’t keep up with the other kids or do the same things. After an MRI in 2012, it was clear this wasn’t just a case of developmental delay. Genetic testing was commenced. After many false starts, in 2018 an answer was found. My sweet girl had Aspartylglucosaminuria, AGU, a rare, fatal, genetic neuro-degenerative disease. Worse, there were no treatments and no cure. Her life would be cut short.
I grieved, but I could not accept this outcome. To have fate match me with a child half way around the world only to have her taken from me, was not an option. I researched, and I reached out. To medical professionals, to other parents and now to you. I found Rare Trait Hope Fund, a US non-profit dedicated to finding a cure for AGU. I found Julia, mom to two boys in Louisiana, both with AGU, who has made it her life mission to save both of her boys. Through her, I found Stephanie and her daughter Hermance in France, Neeraj and Vandana and their daughter Trisha in Australia, Greg and his daughter Sydney in Missouri and Jessica and Erik and their son George in California. Since we started this journey together, we’ve connected with Jesus and Maria and their son Jordan in Spain. A group of dedicated parents, coming together from around the world, to save their children.
I have founded this non-profit to work with Rare Trait Hope Fund to fund an upcoming clinical trial to treat this disease. It’s a simple, well understood disease that lacks only one last thing – a Cure! Please join our journey to save the lives of a small group of kids whose illness is so rare that it’s almost impossible to attract the necessary interest and funding from investors/donors.
Thank-you for joining our fight. Please help us by donating. If you are in the United States, you can donate at www.raretrait.com. Please help us reach out to other donors by posting our website on your Facebook page, Instagram, or twitter account. Together, we can cure AGU!
Barbara Insley