Ari's New Heart Medical Fund

For: The Schultz Family (Mike, Erica, Ari, Lexi, & Eli)
Boston, MA
Organizer: Danny Rosenberg
$36,478
of $250,000 goal.
Raised by 579 donors
14% Complete
Donate Now

The Story

*** In Brief***

  • 5 year old Ari Schultz waited 211 days for a heart transplant, receiving one on March 3
  • Ari is fighting severe rejection in cardiac intensive care
  • During Ari’s fight, the family of 5 lost their home to a mold infestation, and insurance won’t cover the losses
  • The Schultzes are currently leading a campaign to save #100kLives by registering 12,500 new organ donors

****

UPDATE 4-18-17
Help Save 100k Lives in Ari's Honor!

The world is watching and praying for 5-year-old heart transplant recipient, Ari “Danger” Schultz, whose viral video touched millions as he learned that a special heart had been found just for him. Meantime, April is National Donate Life Month. In honor of their son and his donor, Ari’s parents Mike and Erica Schultz have launched a campaign to to pay it forward to save 100,000 lives (#100kLives) by enlisting over 12,500 new people to register as organ donors. REGISTER@ https://echoofhope.org/100klives/

For the Schultzes it has been an unimaginable rollercoaster ride. They waited and hoped they would get a new heart for Ari before it was too late, and then were elated when he finally received one after being on the donor list for 211 days. Shortly after surgery at Boston Children’s Hospital on March 3, 2017, Ari’s body began rejecting his new heart. He went into cardiac arrest. After weeks on life support and harrowing days of uncertainty, Ari, miraculously, is awake and resting in the cardiac intensive care unit. His fight is nowhere near over and he continues to battle like a champ.


Despite their son’s critical condition and the added adversity of losing their home to toxic black mold, the couple wanted to use this opportunity while the world was watching to do something positive to help others. For every person who pledges to be a donor, eight lives are saved and two more people are given the gift of sight. Mike and Erica’s goal is to inspire 12,500 new people to sign up to become organ donors, helping to save 100,000 lives.


“We have been absolutely blown away by generosity and the humanity we have encountered during this enormously difficult time for our family, but the single most important gift we have received is Ari’s new heart,” says Mike Schultz. “We think about the donor family and the enormous, selfless, life-saving choice they made during their most devastating moment. Our hope is to raise awareness for this important gift of life that people can give, especially if they plan. Erica and I have been completely focused on Ari, but want to take advantage of this crucial time during National Donate Life Month to help spread the word to save lives.


“Our son Ari is an inspiration to us. He’s taught us to be brave. He’s shown us how to fight. Our lives have been difficult recently. It would be easy to sit here and do nothing. But for Ari, and for every person and child waiting for the gift of a life-saving organ, we felt we could make a difference. So we’re doing what we can, and hoping people join us to help save #100kLives.”

Registering is fast, easy and secure. Simply visit https://www.echoofhope.org/100kLives for instructions on how to register online as an organ donor. It only takes a minute. Then share your decision with your family and within your social media channels to encourage others to join the cause. If you are already an organ donor, visit https://www.echoofhope.org/100kLives for how you can help as well.

For updates on Ari’s condition, visit https://echoofhope.org/ or https://www.facebook.com/dangerschultz/

---- Original Post ---

Many of you have felt the struggle of missing a day of work to care for a sick child. But most could never imagine the toll it would take physically, emotionally and financially, to move into the hospital with their child; waiting for over 200 days for a heart donor, and praying the clock didn't run out before one came along. Our friends Mike and Erica Schultz had to do just that. Thank goodness for them, on March 3, 2017, their five year old son Ari "Danger" Schultz recevied the most precious gift - his new super heroic heart.  But it's not just back to normal for this incredibly strong family. The new battle will be long, and they will most certainly endure an incredible financial burden as they focus on getting Ari the care he needs, while they also raise their two younger children.  

Please donate to Ari's Medical Fund to support the Schultz family during this time.

Ari’s new heart began beating in his chest spontaneously at 11:32 p.m. on Friday, March 3.

Ari then started having serious rejection complications and was placed back in the ICU. At the same time, the Schultz Family found out there entire house was infested with Black Mold and needs to be torn down. 

They are not ones to ask for help, so we are making it happen for them. Please help this amazing family. 

For the entire Ari Schultz Story - please visit www.EchoOfHope.org

Fundraiser Updates

Posted on June 15, 2017

Posted on June 15, 2017

BIG NEWS - ARI IS GOING HOME!

Please see the most recent update from Mike’s blog and have your tissues ready… All the best, Danny

Sparkle and Shine, June 15, 2017

by Mike Schultz

Video of Ari finding out he is going home: https://youtu.be/RtpdGhN-87k

People often live life quietly. They’re born, go to school, grow up, have their fun, make their mistakes, have their struggles, get married, have a career, make more mistakes, retire, and call it a day. A rare few, however, live life unbelievably. They shine bright. They don’t do anything small.

Some may think it a bit much to say this about a 5 year old, but this is Ari. He doesn’t just shine, he sparkles. Wherever he goes, he lifts up everyone around him.

For the last 188 days, confined to the halls of Boston Children’s Hospital, he hasn’t gone far. Yet, at the same time, he’s lived a life far more rich and full than many of us ever will. He’s been on over 50 medications, had upwards of 10 operations including one open heart transplant, and one emergency surgery to place him on life support.

When he arrested on March 22 we had no idea if Ari would come back to us at all. And, if he did, whether our little boy would still be anything near the same. Against all odds, he did. He’s here.

A few days ago we were talking about basketball off season. I said maybe the Celtics would make a big trade and get someone like Blake Griffin (not that I want him), and could sign a free agent like Gordon Hayward. He said he thinks the Celtics will sign LeBron. I said I’d guess LeBron would play another year for the Cavs, and then probably go to LA.

He said, “Well, different people, different opinions.”

Now that he’s up on his feet he’s back to playing baseball. And golf. And hockey. And hoops. And any sport you can think of not called soccer. Soccer is a no go with Ari.

Tomorrow, which Ari has renamed “FriYay!”should the stars continue to align, he’ll be able to do all of these things at home. 189 days inpatient. 314 days since he was listed for a heart transplant. 2,073 days since his first heart surgery before he was born.

He still has huge hills to climb. We’ll go home on 21(!) medications, not counting the IV infusions he’ll need every two weeks, and the oxygen he’ll be on either full or part time for a while. We’ll be back on Monday for a cardiac catheterization and biopsy, hopefully heading home shortly thereafter.

This weekend, however, we’ll be doing it all at the Sudbury Home (a.k.a. our rental house). Maybe he’ll actually sleep, too. Our window at the hospital faces east. He wakes up every morning around 5 and says, “Dad, it’s morning time. Can we order breakfast yet?”

He doesn’t mind waking me up, but don’t wake him up. A few days ago he was Skyping with Lexi in the afternoon, said he was tired, and had to go. She said, “I’ll call you back when you are sleeping.”

To which he replied, “You better not! I’ll wake up in such a fuss.”

But, you know, don’t worry about waking us up at 5 or anything, Ari.

Visitors will be strictly limited for some time as his immune system is still extremely suppressed. He’ll wear a mask for months in public.

Meanwhile, it looks like a Red Sox game this season at Fenway is a good possibility.

It’s been the great privilege of my life to live at the hospital with Ari for the last 6 months. (Now more than 400 days all in.) I can’t exactly say it’s been a happy time, but as Emerson said, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

Years ago I don’t think I’d have suspected I’d say this about living at the hospital with an extremely medically fragile child, but that’s how it panned out. I wouldn’t change a thing. And he’s the one that makes the difference. Through it all, he’s lived and lived well.

From here forward, Ari, along with a little person who gave Ari the gift of life, will have a chance to live well like the rest of us. Go to school, grow up, have fun, make mistakes, have struggles and so on.

I don’t know what any of that will be, and I don’t know for how long. I am, however, certainly looking forward finding out, and am forever grateful for every day of sparkle and shine yet to come.

***


Posted on May 28, 2017

Posted on May 28, 2017

May 27, 2017 - Hold the Line, by Mike Schultz

After 66 days in CICU, Ari transferred back to the floor yesterday. We’re still day to day in that at any time something can go haywire, but for now, we’re chillin’ on 8 East.

It’s just Ari and me here this weekend as everyone else is up in Maine. He just fell asleep after way too many Star Wars books, so I don’t have the usual window to wax philosophic about things.
But here are a few key points since the last post:

Ari was able to wean off of nitric oxide and high flow oxygen this time. Last time he failed and we had to re-intubate. We’re still in a critical period in that it can take days or weeks for his heart to show stress from not having these supports so we could be back in CICU at any time. Meanwhile, the plan for this weekend: no medical changes and expect Ari to hold the line.

It can change any day, but as of now the rejection is at bay. His immune system is still turned off so infection risk is still very high, and very scary.

https://youtu.be/7Zbz-Qz4Rrk

A few days ago in CICU Ari left the room for the first time in 65 days. The plan was to take 20 steps. Instead he went for a 20 minute walk around the unit and across the hall. On the way out of the room he said, “Zayde, grab my stuff.” Which stuff? “My baseball stuff.” He wanted to go to the first floor (same place we took the famous transplant-news video) and play. That was 2 days ago. The video in this post is yesterday, on his first 8 East walk. Notice he’s very intently working on his form. Listen for the ‘use my hips’ comment.


Also a few days ago, physical therapy came by to take Ari for a walk around the room. They brought him a walker to help! Ari looked at it, picked it up, and started carrying it around the room. Seems he didn’t need the walker.

The nurse was reading him Harry Potter and the Chamber of Secrets. They were in the spider scene and she asked him, “Ari, are you going to dream about spiders tonight?” He said, “No, I usually dream about sports.”

He’s still on milrinone, the direct infusion medication he was on before transplant. They gave his heart a big boost to support it post arrest. Starting Tuesday, assuming no steps back which, again, is a big assumption, we’ll begin attempting to wean off of milrinone. This will take a minimum of several weeks. There’s a chance he could go home on milrinone, which means he’ll essentially be going home in heart failure, but there’s a chance he can wean off while we are here.

There are a few guys that come around playing music for the kids (in part funded by the Ethan Lindberg Foundation). They asked Ari if he had a song request? He replied, “Can you do Scarlet Begonias into Fire on the Mountain?” For those of you that don’t know it, it’s typically longer than 20 minutes. Hah! They learned it and played it for him a few days later.

We showed him pictures of what the new house is going to look like. He said, “That’s incredible!” He wanted to know if we kept all of his stuff in his room, but he doesn’t care that the house will be different soon.

He woke up just now after an hour of napping and said, “I was not sleeping!” I said, “I know, you just closed your eyes for a bit.” He said, “No I didn’t!” He’s back asleep now. On a poop emoji pillow.

If you asked us 3 weeks ago what the odds were of us taking Ari home out the front door of the hospital, we would not have wanted to toss that coin. He’s still very fragile. Almost anything could tip him back over. But today things are looking a little better.


Posted on May 18, 2017

Posted on May 18, 2017

UPDATE - 5-18-2017
Hello Everyone,
Mike updated his EchoOfHope blog with the following:
---- Parked in Cardiac Intensive Care ---
by Mike Schultz

Ari took a few steps all by himself yesterday! He got on the scale for his daily weight and said, “Oooo, I feel something. I’m gonna walk!” We’re taking all the little victories we can get. The last few weeks have been rough. Roller coaster more than anything. For every little bit of good news, we are also hit with a challenge.
Ari took steps! But his liver is hard to the touch and is stressed. Ari’s heart rate is stable! Then it’s up 20 points for no reason. Ari is eating and not throwing up! But his last echo showed that his right atrium is now moderately to severely enlarged.

Because he’s been having trouble with disturbingly high heart rates, and his echo showing continuing issues, the team is searching for answers for what to do to help him. This morning Ari had a cath to get more data and get a new biopsy to see if the rejection is still holding off. The data showed he’s about the same. Still riding the line with pressures.

We won’t know about the biopsy until tomorrow, but nobody suspects active rejection right now as his immune system is completely shut off. One of the senior attending doctors told us, “Ari is the most immune compromised child I have ever cared for.” We are on pins and needles every day hoping he doesn’t get a cold. If he does, there is a good chance he wouldn’t be able to fight it off. Infections also add stress to his heart and body. Any new stresses to his heart could tip things in the wrong direction.

Meanwhile, Ari’s spirit amazes us every day. Yesterday he met two professional golfers who came by to visit. He was all excited, showing them videos of him on the golf course, and telling them he was “born with that swing.”

They asked Ari about the sports he liked. He rattled off the list, including football, telling them that he plays Madden on PS4. They told him Tom Brady was on the cover this year. Ari asked, “What about Jimmy Garoppolo?” They said, no, he hasn’t been on a cover. Ari responded, “Well, there’s always next year.”

He’s been playing Home Run Derby on MLB The Show on PS4, nailing home runs and doing play by play for each one. And of course he plays golf and baseball for physical therapy every day.

Link: Ari Playing MLB The Show on PS4

Even here in the most difficult of settings he is growing up and getting smarter. Pretty incredible given the tons of narcotics he’s still on. He asked a few days ago if we thought he’d be able to go home this year since, as he said, the year just started. He hasn’t really caught up to the fact that he lost two months of time after the arrest. He also wants to know when he can move back to 8 East because, when he’s there, he gets to leave the room sometimes.

He hasn’t left his room in 2 months. He gets to sit on the bed or the chair, and in between try to take a few steps before he gets exhausted, though yesterday he had 3 sessions playing hockey and baseball. He swung the bat pretty good for 5 minutes. Was funny watching him try to run tied to about 10 wires and 2,500 pounds of equipment. (I guess normal funny and CICU funny aren’t quite the same thing.)

Unfortunately, because we are not sure if he is getting better yet, we are parked in the CICU. Ari is on a ton of support that can only be given in an ICU. He hasn’t been able to wean off yet, though the last couple of days we made some snail’s pace progress. Will this last another few weeks? If he can wean off of nitric oxide this time (last time he failed) it could be. Month? Months? We have no idea. It all depends on whether his new heart can still recover enough from the damage sustained during the arrest and the rejection episode.

A few days ago we had the Red Sox game on. (And, at the same time, he had Red Sox highlights on the iPad. And he had me playing MLB on PS4.) He looked over at us and said, “There’s nothing better in the whole world than watching a Red Sox game with your family.”

Here’s hoping someday soon we’ll be able to do it right at Fenway with Ari, Lexi, and Eli.

P.S. We can’t thank everyone enough for all of the help and support. It’s hard for us here, but we realize it’s also hard for other people who depend on us and who are supporting us as the months wear on and on. Thank you doesn’t seem to cut it, but know that we mean it deeply.

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