Holiday shouts to Johnny, please!

Several readers have commented about how Rudy’s Beat has made them aware of the HLHS community and has led them to follow and pray for other families who are waging their own battles.  As we’ve felt the isolation that’s a part of such a struggle, we draw comfort by being connected to others at various stages in the journey.  Knowing what others are going through can be encouraging, helpful and, yes, at times heartbreaking–but it’s much better than going through this alone.

A few months ago I re-connected with Kathy, a high school acquaintance in NJ 20+ years ago, as her teenage son is a seasoned HLHS warrior.  She just forwarded the following and I thought some of you might want to be involved.

Kathy writes:

The son of a friend of mine is losing his battle with Congenital Heart Defects. He is 19 and has HLHS just like Garrett. He is trying to hold on through the holidays, but his lungs have irreversible damage and it is straining his heart. His mother has put out a request to give Johnny a “shout out.”

MaryAnn has blazed this trail ahead of us and has always been a tremendous source of strength and advice for me as we have gone through our challenges with Garrett. She has had her hands full with Johnny’s health concerns for a long time but whenever I was having a challenging moment she has ALWAYS taken the time to write me a note acknowledging in her humorous way that, yes, the whole situation sucks but that I am a great mom doing the best I can in a very difficult situation. It means a lot.

Here is the email she sent out. Please take a moment to read this note and see if it is something you would like to do. Also, please feel free to repost this note to anyone you think might be able to.

———————————–from MaryAnn —————————-

So we were basking up here on the sunny shores of Lake Erie (in our down-filled parkas)and realized it was time to send the hard message to our family and friends.

Johnny’s gotten excellent medical care in the year we’ve been in Ohio, but the condition of his damaged lungs is something that couldn’t be reversed. Now he is in end-stage pulmonary failure, and the strain on his heart is showing.

However, as is his custom, he continues to defy logic. He survived a bout of flu last week, which prompted a discussion with his nurses and hospice people. We think Johnny is holding on for as much of the holidays as he can, so we’re shifting to an accelerated Christmas plan here.

If you’d like to be part of our shout-out to Johnny, here’s the thing:

I’ve set up an e-mail address for Johnny — johnny.aquilino@yahoo.com — and am asking everyone and anyone to send him holiday greetings by e-mail.

What I’d really love is for everyone to make a hand-lettered sign with a message on it for Johnny, then get a photo of themselves holding the sign and e-mail it to him. I’ll print them out and hang them all in his room — and I’d love to cover the walls, if you catch my meaning.

Anyhow, I’ll keep you posted

Love

MaryAnn

4 thoughts on “Holiday shouts to Johnny, please!

  1. Rolf, Thanks so much for forwarding this message. What a tough thing to read when we all know that the future is so uncertain. That “uncertainty” doesn’t seem like it should arrive at age 19…or ever for that matter! We will certainly spread the word, and do our part to fill Johnny’s heart and mind with love of the world around him.

    Thanks

  2. Already sent our shout out to Johnny and have asked friends and family to do it as well. I hope his mom can fill his wall so fast she won’t know what to do with them all. Now praying for Johhny and his family as well.
    Hugs and love to Rudy and you all as always.

  3. Our world continues to expand as we hear of other HLHS fighters through Rudy’s Beat. What a courageous group of folks that are dealing with this condition in members of their families. Our prayers extend to all of you….Keep the faith, rest in Him, know you are loved.

  4. thank you for sharing this with us, with Dawn’s help this old grandma might be successful with the computer. enjoy Today, Nick’s Grandma

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