An update on Connor, boy with Pearson syndrome

Last week, Blind Life episode 6: Cooking with Connor was released. In my blog post about Connor, I wondered how Connor and his family were doing. Well, I got an update from Connor’s mom, Alyx, shortly thereafter.

Christine,
I wanted to let you know that Connor still watches MasterChef regularly and you and your episodes are still his all-time favorite! We here at home probably have whole episodes that we know by heart because we've seen them so many times. :)
Thank you for posting about the wonderful memories you gave my boys! Through you, I hope we can broaden awareness about Mitochondrial Disease and the terrible consequences of an incurable illness.
An update on Connor's condition - since we met with you, Connor's condition has continued to deteriorate. He is now in the final stages of kidney failure and has lost most of his hearing. His neurological and gastrointestinal issues have also worsened and we deal daily with pain and muscle weakness. Through it all, 
Connor is remarkable in his constant cheerfulness and good humor. He continues to make all around him laugh.
Connor is a true gift of joy and has taught me much about the important things in life, like making amazing memories with my children. Our afternoon with you is one such memory. Thank you. We have the picture of you with Connor on his bedroom wall and it makes us all smile when we see it.
Thank you and I hope all is well with you!Best regards,
-Alyx

My heart sank a little when I read this, but I am moved by Connor’s (and his family’s) resilience. I’ve had my fair share of challenges, so I know how tough life can be sometimes, but everyone’s paths are different (and their reactions to those paths are different, too); I’m just grateful Connor and his family have been able to take away with them the positive.Connor’s mom has not been able to keep up with howisconnor.com, but she has informed me Connor’s Facebook is much more active.

• Find out how you can support Connor’s cause through the Connor McArthur Research Fund.
• Learn more about Pearson syndrome and other similar conditions at the United Mitochondrial Disease Foundation.
• To learn how he’s doing, follow Connor at Kids Like Connor.