Mila's Miracle

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In his mind, there’s no choice but to push through it… because there are only so many more of these small moments of joy he might have left with his son.

Bath time is a special time for Charlie and his dad Matt. A quiet moment together at the end of a long day. But Charlie can’t move independently anymore, so his dad has to carry and lift him often, including in and out of the bath.

It's truly unique to sit in a relatively small room with many of the the country's leaders in the space, including in government, industry, and investment, who are so motivated to work together to build a better system for access to medicines... and in turn make a global impact.

It was an honor to speak at the @MHRAgovuk's event at the @royalsociety in London this week alongside Lawrence Tallon and other leaders committed to making the UK the place for innovation and investment in health.

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On the ever dwindling chances to get out of the house as a family and spend time with Charlie’s cousins, that brief moment of normalcy is faced with the painful glimpse of what life as a family could have been.

Charlie and his family used to go bowling and to the arcade together, but they rarely go any more as a family since it’s too hard for him to participate and the loud noise is just too much.

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But their smiles quickly fade as they watch their boys together, Charlie no longer able to say his big brother’s name. The future they once hoped for, painfully obvious that it will never be.

Life for Charlie and his family has been a roller coaster. He started his childhood happy and healthy, then unexplained problems culminated in a fatal Batten disease diagnosis. Hopes and dreams for their futures came tumbling down.

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They have accepted that the treatment won't save Charlie, but at least they can tell themselves they tried, and for that effort, Charlie might yet still save others. That chance to try is something millions of others like them will never have the opportunity to say.

When Charlie was 6, he was diagnosed with CLN1 Batten disease. His parents were told he would die. They raced against all odds to get him to a genetic treatment never used before. Amazingly, they won.