The Impact of a Stranger

William - 9 years old

Michael - 5 years old

I’m a teacher and well, crying over other people’s children kind’ve comes with the job. And I knew that when I found the ADSL facebook group that I would sometimes be subjected to stories of children not doing well and that it would hit really close to home on occasion. Honestly, I craved that as much as I was terrified of it. Because as much as I feared knowing, at the same time I needed to know. There was a period of time where I went seeking every story of a dying ADSL child that I could find. I wanted to know what the end looked like and his fleet of doctors, who had never encountered another patient with ADSL, couldn't tell me. And sure, doing this would throw me into emotional turmoil for a day or two, but it was also reassuring because now I could appreciate Cyrus's bad days and know - this is not the end. This is just a bad day.

Katelyn - 3 years old

Since being part of the group and being friends with its members I follow so many of these children's stories with avid interest. I am constantly showing pictures and reporting how they are doing to my husband. Doesn't Gabriela look like Cyrus, I ask him. And look at Hamish - he's so happy! See Katelyn's expression - Cyrus does this sometimes too! She has pneumonia again by the way. And Matthew is in the hospital because they can’t control his seizures at all. But Carson is four years seizure free! I honestly didn't even know that was possible with ADSL!

Hamish - 6 years old

He used to always respond with “Who?”, but he’s starting to recognize the names. Either that, or he's just learned that if I mention a kid's name he doesn't recognize that it's probably one of these kids. Sometimes, when the news isn't good, he’ll get silent like he doesn’t know how he feels about it either.

Matthew - 12 years old

And now one of these children seems to be on their last stretch of this journey. His name is William. And I find myself affected far more strongly than I thought I would be. The morning I read the news I couldn't stop crying. And I must confess that I have never before cried for a child I have never met.


But of course, this is so much more personal than that. Because every time I hear or read one of these stories, I feel like I’m seeing my own future.

Hadyn - Lived 14.5 months

And I know that right now, this is so not about me. I just want this mother to know what her group has meant and still means to me. And I want to thank everyone there for being so vulnerable. For sharing your joy and your pain, for sharing the impossible choices you have had to make, for being a role model. I'm amazed at your capacity to express your understanding in so few words. To express your compassion and your love for essentially total strangers.

Sydney - 7 years old

It’s strange to be connected to such a unique group of people from all over the world. And part of me wishes that we didn’t have a reason to know each other - that my child was healthy and that your children were all healthy, but I also cannot put into words how much comfort your presence has brought me even if we do not always talk deeply or often. And so I’m grateful. I'm grateful that my family is going through this during a period of history that has access to this kind of connectivity. That we are not as isolated as maybe we would have been during a different time.

Jude - 5 years old

And more than anything, I want you to know that your sons and daughters - whatever they have to struggle through, whatever they have to ultimately face, whatever they cannot and may never do - they have touched my life in a profound way. Even from half a world away. As I know that they have touched you. 

I wish I could offer you some form of comfort - even just a hug. But words are all I have. Know that I'm thinking of you, your child, and your family. I am amazed by and look up to you. And while I dread the day, I hope that I will be able to live up to the example of grace and strength you have set when the inevitable time comes.

Carson - 5 years old

Gabriela - Almost 3 years old

Carola - 10 years old

You have touched so many lives William.
We love you.