Writing this post is one of the hardest things we’ve ever had to do. It feels impossible to capture the heartbreak, the sorrow, and the deep sense of loss that we are now experiencing. But we must share it, as it marks the end of one chapter of our children’s incredible journey, one we’ve fought with every ounce of strength we have.
Since Ollie and Amelia were diagnosed with CLN2 Batten disease, their lives have been a relentless battle. A battle that has stolen their ability to move, to speak, to play, and even to swallow. A disease that has turned their world, and ours, into a place of darkness. But despite all of this, despite the overwhelming challenges, Ollie and Amelia have shown resilience, strength, and bravery that have left us in awe. They have been our warriors, and their courage has been nothing short of remarkable.
We promised them, back in 2016, when Ollie had his first brain surgery, that we would fight alongside them, no matter what. We promised that we would continue this fight until they gave us signs that it was time to let go. We made that promise with all our hearts, and we have kept it every single day since then.
But today, we are faced with the hardest decision we have ever made.
In August of this year, Ollie and Amelia received their last brain infusions—treatments that have kept them alive for the past eight years. These bi-weekly infusions were the only thing slowing the progression of the disease, and they became a lifeline for both of them. We never imagined a day would come when we would have to make the decision to stop their treatment. But after many months of agonizing conversations with their medical team, we came to the heartbreaking conclusion that it was time.
We want to make it clear that this decision was not made lightly. It was made after careful consideration, and in collaboration with Ollie and Amelia’s doctors. There is no easy way to explain how it feels to reach this point, to know that we have to let go of the only treatment that has kept them alive for so long. It feels like a crushing blow to everything we’ve fought for, and in many ways, it feels like we are back at the beginning—a terminal diagnosis with no hope left.
This decision, though incredibly painful, is what we believe is now best for Ollie and Amelia. We have come to realize that, despite all the love we have for them, there comes a time when we have to stop fighting to keep them alive for ourselves and start fighting to make their remaining time as peaceful, as comfortable, and as filled with love as possible.
Letting go of our desire to keep them alive at all costs is the hardest thing we’ve ever done. For so long, we’ve been so focused on saving them, on finding ways to fight this disease, but now we must face the reality that there is no cure. We know that we’ve given them everything we could, but we also know that there is a limit to what we can do. No matter how badly we wish we could hold onto them forever, we can’t keep them alive for our sake anymore—we must do what is best for them.
This decision has not been quick or easy. It has been made after countless conversations with doctors, specialists, and our family. Every moment of doubt, every tear shed, every fear faced, has led us to this point. We wish with all our hearts that there was another way. But as we move forward, we focus on what we can do now: to provide Ollie and Amelia with the best life possible, filled with love and beautiful memories. We want to create moments that they can treasure, and that their siblings can hold onto after they’re gone.
As we begin this new chapter, we will continue to keep Ollie and Amelia as healthy and comfortable as possible. Their health will always be our priority, but we also want to ensure they feel loved, cherished, and supported in every way we can. We will focus on creating beautiful moments with them, on watching them smile, on giving them the love they’ve always deserved. And when the time comes, we will cherish those memories with all our hearts.
We want to take this moment to thank everyone who has supported our family through these years. Your kindness, your love, and your words of encouragement have meant the world to us. We still can’t fully comprehend that this is our reality. Every day feels like a dream, and writing this post feels like we are writing a story that isn’t really ours. But it is. It’s our story, our heartbreak, our fight, and our love.
Even as we face this loss, we continue to fight for future children and families diagnosed with CLN2 Batten disease. We still believe in the importance of early access to treatment. This disease has taken so much from Ollie and Amelia, but we will never stop fighting for a cure, for better treatments, and for the hope that one day no family will have to face this diagnosis without a fighting chance. We will continue to fight for the future, for those who come after us, and for the hope that one day, this disease will be stopped.
But for now, we focus on Ollie and Amelia. On loving them, on cherishing every moment, and on being grateful for the time we have left with them. This is our reality now, and while it is impossible to imagine our lives without them, we are determined to make these final days as meaningful and as filled with love as we can.
Ollie and Amelia, we are so proud of you. You are our heroes, and we will fight for you, love you, and honor you for as long as we can. Your strength and courage will never be forgotten.
