Daniel Brown Memorial Fundraiser
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It is with extreme sadness that we announce the passing of Daniel Brown on January 5, 2021, at the age of 9, after a lengthy fight with Batten Disease. Daniel was diagnosed with Batten Disease, late infantile CLN2 aka NCL in October 2015 at age 4. It is a rare genetic disease that is always fatal. Daniel was a bright spark in this world and will be deeply missed. He touched the lives of so many and it is our turn to give back to Daniel’s family in their time of need. There have been numerous emails, texts, and calls from people asking how to help, so this memorial fundraising campaign has been created in Daniel’s honour to help the Brown Family make this difficult time more about celebrating his life and his memories.
Daniel’s mom, Lori, posted this on their Daniel’s Defenders Facebook Page on January 6/21.
You never know when it will be your last.
I spent Sunday night over at Ronald McDonald House with Cashen, and Tony at Rotary Flames House with Daniel. The nurses had been on their way to give him a bath when I left, and this is how his hair was when I came back Monday morning. I thought he looked so incredibly handsome, I'd never combed his hair down like that, so of course I stopped and took a picture. His little face was so puffy though. That concerned me.
We sat, Tony and I with one of the physicians and the grief counselor, we talked about perhaps taking Daniel home for a few days during Tony's next time off work. The overall impression was that Daniel would take his sweet time with his last days on Earth drawing out into months, likely. Although, with the reminder that no one ever knows for certain, especially with children, and that he could surprise us that day.
That night, overnight, things looked a little shaky, but he'd had so many moments over the past month that were. Myself and the nurses did everything we could to regain his comfort, I laid in bed and cuddled him, then eventually went back to bed in the next room.
Two hours later I heard a whisper, then footsteps walking towards me. They told me I had to come, but when I looked at him, I didn't process why. He looked so beautiful and peaceful. And he was. My sweet boy.
As we sat in his room there, with him still present, I talked about how the lights had turned themselves off and on several times within the past week. One particular time, exactly when I had asked if he wanted it off. I think people were doubtful that it meant anything, but then, as we were there, it began to happen. Over and over again, all day for the rest of the day, the light would get gradually dimmer, then flicker, shut off, and come back on with a burst of full brightness. Everyone witnessed it, even the gentleman from the funeral home who thought he had somehow accidentally knocked it, even though it was on the other side of the room.
If you don't believe there's something next, then that's ok and I won't try to change your mind. But I know what happened in that room had nothing to do with the actual light bulb or wires running to a switch.
I love you, sweet boy. Wherever you are
Daniel’s mom, Lori, posted this on their Daniel’s Defenders Facebook Page on January 6/21.
You never know when it will be your last.
I spent Sunday night over at Ronald McDonald House with Cashen, and Tony at Rotary Flames House with Daniel. The nurses had been on their way to give him a bath when I left, and this is how his hair was when I came back Monday morning. I thought he looked so incredibly handsome, I'd never combed his hair down like that, so of course I stopped and took a picture. His little face was so puffy though. That concerned me.
We sat, Tony and I with one of the physicians and the grief counselor, we talked about perhaps taking Daniel home for a few days during Tony's next time off work. The overall impression was that Daniel would take his sweet time with his last days on Earth drawing out into months, likely. Although, with the reminder that no one ever knows for certain, especially with children, and that he could surprise us that day.
That night, overnight, things looked a little shaky, but he'd had so many moments over the past month that were. Myself and the nurses did everything we could to regain his comfort, I laid in bed and cuddled him, then eventually went back to bed in the next room.
Two hours later I heard a whisper, then footsteps walking towards me. They told me I had to come, but when I looked at him, I didn't process why. He looked so beautiful and peaceful. And he was. My sweet boy.
As we sat in his room there, with him still present, I talked about how the lights had turned themselves off and on several times within the past week. One particular time, exactly when I had asked if he wanted it off. I think people were doubtful that it meant anything, but then, as we were there, it began to happen. Over and over again, all day for the rest of the day, the light would get gradually dimmer, then flicker, shut off, and come back on with a burst of full brightness. Everyone witnessed it, even the gentleman from the funeral home who thought he had somehow accidentally knocked it, even though it was on the other side of the room.
If you don't believe there's something next, then that's ok and I won't try to change your mind. But I know what happened in that room had nothing to do with the actual light bulb or wires running to a switch.
I love you, sweet boy. Wherever you are
Give $200 to help get this fundraiser to its goal
Fundraising team: Daniel's Defenders (3)
Daniels Defenders
Organizer
Red Deer, AB
Tony Brown
Beneficiary
Andrew Gillott
Team member
