07/30/2024
Dear ,
Please meet precious Loic. I fell in love with him the moment we met! My heart went out to Sherine, after our first call. You know it takes a village to raise our children, but how powerful we can be when we lock arms united with parents who are fighting the same mission. Parents who are given a limited time for living life with rare diseases, knowing their child faces a fatal statistic. TOGETHER we can form an alliance and initiate change for humanity, once again!
Always for the children,
Loving Loic
Highlights
Over the last several months I’ve had the opportunity and pleasure of getting to know Alison Rockett. God and the universe were at work in bringing us together. I was connected to Alison by Dr. Julie Ducharme, who knew and worked with Paul Frase, a former NFL player whose son suffered from Myotubular Myopathy (MTM), a rare and terminal genetic disorder. Paul and his wife, Alison, had started the Joshua Frase Foundation (JFF) in the 1990s and had developed a gene therapy for MTM. Paul quickly responded to an introduction email, and we scheduled a Zoom call so I could pick his brain about the process he went through with his foundation. Once we spoke, his response to my questions simply was, “You need to talk to Alison.”
After talking with Alison, we had an instant connection. It was clear she had been through a lot and had learned many lessons along the way. Lessons that I needed her to teach me to avoid mistakes in our journey to a cure. With PKAN’s quick progression, a fulltime job as a lawyer, and raising a young family, I don’t have time to make mistakes.
In a lot of ways, in talking with Alison, I felt like I was looking at myself in 20-years. Joshua had passed away in 2010, and she and Paul had since been divorced. Yet Alison had pressed on for the MTM community, developing a gene therapy during a time when the technology did not exist. I asked Alison if she would be willing to work with me as an advisor for Loving Loic Foundation. She said yes, noting that it isn’t something she typically does anymore, but she felt connected to me.
Together, Alison and Paul wrote Game Changer- an autobiography about their journey with Joshua and MTM. I bought it after my first call with Alison, but it took me several months before I could bring myself to read it. I was scared it would be too sad, knowing that Joshua did not make it. Alison ended up coming to visit me in Montana over her birthday and I suddenly felt ready to read it—I’m so glad I did.
In Game Changer, I was introduced to Joshua. A wildly intelligent green-eyed boy, who lived his life with his whole heart. As the book describes: “Joshua continued to defy the odds. He amazed all who knew him with his miraculous recoveries and moments of profound, thought-provoking statements. Sometimes, we as parents gloat about our children with biased and exaggerated conjectures. In Joshua’s case, Alison and I could not bestow upon him words to describe the powerful impact he had on every individual who had the opportunity to see inside his heart.”
One of Joshua’s teachers said, “he truly is an angel sent to earth to touch so many lives.” This is almost verbatim the way one of Loic’s teachers has described him to me. I see so much of Joshua in Loic. I wish I could have met him.
As I read the book (through many tears), I found countless parallels between the Frase’s journey and ours. It is beautifully written and perfectly captures the experience of being thrown into a life that we did not ask for. Living through the grief of the loss of the life you thought you would have, while also knowing in my heart that Joshua and Loic are the greatest gifts we could have been given. As Alison says, “I could look at the ashes, but then I would miss the beauty.”
Most importantly, the book brought me something I was not expecting—hope. MTM is a disease that typically takes 50% of children in the first 18 months of life. Joshua was miraculous, defying nearly all odds, fighting off death countless times and living until he was nearly 16. It reminded me that every child’s journey is their own and not to heed to the statistics and prognosis, but to live in the hope and conviction that Loic is different. He is here now. He is perfect. He is beautiful and full of life. He will be cured, and Joshua’s spirit is with him along the way.
You can purchase Game Changer on Amazon or gamechanger.global.
