Ari's New Heart Medical Fund

$302,986 of $500k goal

Raised by 4,951 people in 1 month
Danny Rosenberg
on behalf of Michael Schultz
 TARZANA, CA
UPDATE - 4-22-2017:
Ari has been breathing on his own since April 15 at 10:40 a.m.

He’s pretty stoned on all the narcotics he needed to keep him pain free and paralyzed while he was on life support. It’s going to take a while to wean off. Ari’s cardiologist said, “He might go to first grade on methadone, but I’ll still consider it a victory.”
 
His heart took quite the assault during the arrest, CPR, and life support. It’s wait-and-see on how it will recover, but the doctors are hopeful. Right now it doesn’t look great, but it doesn’t look too bad either.

His real enemy will be rejection. This fight is still in front of him. In the ICU we can stop rejection cold, but eventually medications Ari can take at home have to start holding the line. His anti-rejection regimen here forward will be intense. How it all turns out is up to Ari.

Meanwhile, he was watching the Red Sox play Tampa Bay on Saturday. He wasn’t saying much. When Corey Dickerson hit a home run for the Rays, Ari said, “Oh maaan.” We just watched the teaser trailer for Star Wars Episode 8. I asked him, “You remember Episode 8 right?” He said, “Yeah, The Last Jedi.”

And we got our first smiles today.

That’s our boy.

SAVE 100,000 lives! It's National Donate month and the Schultz family has started a campaign to save 100,000 lives by getting 12,500 people to register to be organ donors. See more here: https://echoofhope.org/
and sign up today to help save lives!

***House Update***

We are completely amazed by the shows of financial and housing support for us when we lost everything. We have a great team working on building a safe and comfortable new house similar to our old one right on the same spot.

People asked us why we didn’t just move. We thought about it, but we couldn’t leave Ari’s Make a Wish basketball court  with him still in the hospital.

If you want to help with the house rebuild in any way (we still need goods and services) contact Dan James at djames@erland.com or 781-844-5688. 
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Original Message:

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.

The most recent update can be found below:

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

Once in a while you get shown the light in the strangest of places if you look at it right.

What’s the current situation? How’s Ari?

As of now, he’s stable in the cardiac intensive care unit. He is deeply sedated and has a breathing tube in. He looks like he’s resting comfortably. Beyond that, he’s still in the weeds and has a lot of mostly anticipated challenges to overcome so there’s not much of a medical update.

What comes next short-term?

Ari has some tightness in his pulmonary vasculature. We’re treating that to calm it down, and it calms down fairly well with extraordinary medicine. But we need it to calm down with just everyday medicine. So we wait for that.

Once it’s calm enough, we pull the breathing tube and see how he does. Hopefully the tube stays out and he can breathe on his own without too much support.

He gets a ton of medicines right now, part cardiac, part to shut off his immune system.

Next week he gets a cardiac cath to check his pressures, and to do a biopsy. The biopsy is to see to what extent Ari is rejecting his new heart. We expect some level of rejection at this point as most kids like Ari have rejection at first. The hope is that it’s not too strong.

If it’s not too strong, and he’s gaining strength, we go to the floor to recover.

How long until Ari comes home?

Before this process, we were told to expect 1-3 months post-transplant. Right now it’s looking like…1-3 months. Shorter than that is possible but unlikely. Longer than that would mean his struggles are extraordinary. Expectations don’t really matter though. We’re day to day.

Is his heart fixed? Is he better now?

No, not really. Getting a new heart, we were told, is like trading one disease for another. He’ll be on a lifetime of meds, and there are a lot of health challenges and risks.

When he was listed, Ari was given about a 70% chance of surviving the first year. This is lower than other children with fewer risk factors. Most of the extra question marks are due to surviving the immediate transplant period, pulmonary vascular resistance, and rejection.

What are the risk factors?

Risk factors, in general, with heart transplant include:

1. Rejection: All transplanted patients risk rejection. Ari is at higher risk of rejection than most. Some rejection we expect. Severe rejection is life threatening.


2. Infection: Think of your immune system as an armed military unit that’s always busy fighting. With most transplant patients they said they take away the guns. With Ari, they are taking away the guns and the knives, and tying both hands behind his back. Eventually it will get better, but he will always be immune compromised.

3. Post transplant lymphoma: Wikipedia says it best.

4. Vasculopathy: Heart transplant patients eventually get coronary artery disease. The question is how long it takes to get it. We’ve been told 10 to 20 years, but there can be early onset.

5. Basket of risks: This is just a mix of everything, including medication side effects like stomach issues and kidney problems, which for transplant patients can get bad.

Will he definitely get these?

It’s all maybe. Add up all the maybes and we’ll see some of them for sure, but the hope is that whatever we see will be manageable, and we ‘ll keep on keeping on whatever happens.

Ari is certain to have some level of rejection. The hope is with a lot of meds we’ll be able to manage it. Over time it often gets better, especially after a year or so.

What happens when we get home?

Ari’s first year is likely to be challenging. After we go home, we’ll be back at the hospital several times a week at first, then several times a month. He’ll have regular caths and biopsies, and tons of other tests and checks. Home life should be pretty normal (as normal as it gets at our house) assuming he’s feeling okay.

How will his immune system be?

His immune system will be very weak for a while, and always somewhat compromised. When he goes to school and anyplace, we’ll have to take extra precautions, and have to hope that others will understand and respect that Ari can’t be around anyone who is sick and will have some restrictions. For example, Ari will never be able to be around non-immunized people. He’s protected by the ‘herd’ of everyone being immunized.

Steroids will be in his med cocktail for the rest of his life. Anyone who has been on steroids long term can tell you that being on steroids is no walk in the park. However, with the steroids and other meds, the idea is to get them to a level that isn’t medically challenging or too uncomfortable for Ari day to day.

For a while, we’ll wear masks when we go out.

What if he gets sick?

First sign of sniffles for a while it’s straight to BCH. The protocol is to assume it’s rejection until proven otherwise. If it’s not rejection, Ari will have a tough time fighting whatever it is off. Over time we’ll learn Ari and perhaps that will change some, but for now, we expect a lot of hospital visits and stays.

Other limitations?

No Advil
No grapefruit or derivatives (no Fresca!)
No body piercings or tattoos
No heavy contact sports varsity level (hockey, lacrosse, football) or competitive weight lifting
Always strong sun screen
No new pets for a while
No picking up poop ever (sorry neighbors when he gets older and can walk Melody)
Food limitations similar to being pregnant (no sushi, no deli, etc.)
No water parks. Swimming in the lake? We’ll see…
No Yankees paraphernalia
Medications?

Ari will be on a series of anti-rejection medications and steroids for the rest of his life. He may be on a ton of other things, too. We’ll see. He can never, ever miss a dose of the anti-rejection meds. Rejection can come on fast and there are no mulligans. You don’t want to give it an opening.

What about school?

We hope he can go back in September. We’ll need to be very careful about anyone being sick, and work with the school to make sure Ari isn’t in any situations where he is at higher risk for getting sick. Schools in Stow have been great to us and Ari so we’re excited to get him back.

Can we have visitors?

Right now it’s parents only. Over the coming months that will relax slowly. When we get home for a while we will be unlikely to have visitors in the early days, but over time Ari will be able to be around more people.

What about sports?

Ari should be able to do pretty much anything over time, though a few high contact sports will be a no.

How well do transplanted hearts do over time?

Hearts commonly do well for 15 years plus or minus. Can go much longer or much shorter. Right now he’d have to get re-listed if it fails. To do that he’d need to qualify again, meaning he’d need to be healthy enough all around to get one.

Will he get a new heart again someday then?

What they’re hoping is that 15 years from now medicine – rejection, cardiac, and everything else – will be much better. And perhaps they can grow him a heart. Or print one. Or something else. The idea is to buy 15+ years, have Ari finish college, and take it from there.

Finally, please keep the donor and family in your thoughts. We are forever deeply grateful, and sorry for their unimaginable loss.

To follow Ari's story, follow Ari "Danger" Schultz on Facebook, or www.echoofhope.org

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The Shultz's were our guides when we first learned that our son's heart had a defect. They have been pillars of support ever since and we wanted to pay it forward for such amazing and selfless people by launching this campaign.
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UPDATE 4-6-2017: Please see below. Mike just sent out the following update I wanted to share with all of you. Thank you all for your continued support and inspiring messages. Ari is a fighter!

----------- Mike's Update -----------
They chose to post this picture of Ari to raise awareness for the need for people to register as organ donors during #DonateLifeMonth. Approximately 300 pediatric heart transplants are performed each year. Too many children don’t survive the wait. Register at #DonateLife.

Gunfight at the O.K. Corral

Earlier this week Ari’s blood pressure was regularly bottoming out. By 10 a.m. Tuesday his systolic pressure had dipped into the 30s. I told Erica on the phone. She said, “Is this it? Should I rush in?”

Ari was struggling mightily. So much so the doctors had the conversation with us about how Ari wouldn’t survive CPR and ECMO again. Those are off the table. He needs to keep it together. Last of the 9 lives. Gunfight at the O.K. Corral.

Then, as he has done so often in his short life, he dug in and attacked, pressing the enemy with great fury and relentless determination.

Now he’s awake(!), alert, and royally pissed off. He still has the breathing tube in and hates it. He’s on enough narcotics to stop an elephant. (No joke.) Pressures are better but still concerning. He knows he can’t talk, so he keeps mouthing “Help me. Help me.”

So that’s what we’re doing. I just finished the night shift. We watched the Red Sox and Celtics, sang Scarlet/Fire, Tin Man and Rosanna, and tried to keep calm and…no, screw calm. Stay pissed and keep fighting.

Erica is with him now as we literally drag the rejection causing antibodies from his blood. I’m in the cafeteria grabbing breakfast and getting ready to dive back in. Dad just got here to tell Ari bad jokes and keep the Schultz legacy alive.

From here forward Ari has to hold the line, stay alert and moderately upset, and wean sedation in preparation for taking the breathing tube out. Can’t be on so much morphine that you don’t care about breathing once the tube is out. He needs to be ready to rock. Could take days or who knows how long. That’s a lot of Bruins highlights.

And he’s by no means out of any woods. When we ask the team what to expect in the days to come, they tell us they’re thinking more hour by hour. One thing at a time. Ari has been throwing curveballs left and right, including this morning with fevers and smaller blood pressure swings.

Meanwhile, we’re hammering at the rejection with every med and therapy possible. If it can be pushed back it will be. As we do this, infection becomes a dangerous threat. No immune system at all. No choice. This is the path. And a long path it is.

Still first things first, let’s get that tube out. Time to see what the man has to say.

***
Brief house update:

We have a rental in Sudbury! 5 minutes from the house. Starts May 1. Will figure out mild homelessness until then.
We’re putting plans together and permitting for the new house now. Planning to put something up very similar, just safer and better engineered. Permitting hopefully done in 8 weeks. Then we can get started.

As long as Ari walks out the front door of the hospital, though, we’ll be fine. The house is just a house. Home is where your family is.

--------------------
Update 3-26-2017: Mike Shultz has updated EchoOfHope.org - his amazing blog about Ari “Danger” Shultz and family. Please see below for the post in it’s entirety. Ari is an incredible fighter. We have been sending all your messages of inspiration and support to them - thank you! We will update you as we get information. All my thanks, Danny

“Loss for Words” by Mike Schultz

Ari and I [Mike] head to a Celtics game just before Ari went inpatient

Nobody should ever have to hold their 5-year-old’s hand through a cardiac arrest. 20 minutes felt like a second, and like forever. I am so grateful, however, that I could be there with him the whole time talking to him. I’m glad I could find the words for him, and have him to focus on me and not what was happening to him.

Right now, I got nothin’ much. At least nothing eloquent or insightful. Loss for words. This just all really sucks.

Ari went into cardiac arrest due to severe rejection at 8:20 p.m. on Wednesday, March 22. His heart rate first rose and then started to drop slowly before his heart gave out. When it reached about 70 beats per minute, they started CPR and the process of racing to the cardiac intensive care unit for emergency surgery to place him on ECMO , or heart/lung life support. The machines are now doing all the work of his heart. Ari’s is resting.

Given the acute rejection that had recurred and the trauma of the arrest, CPR, and emergency surgery, his heart did not beat for approximately 36 hours. The doctors told us this was to be expected. They hoped it would begin beating again before 72 hours. It did.

However, it’s not doing any work inside his body. Life support is doing everything. Being on ECMO carries with it very serious risks of bleeding, clotting, liver, kidney, lung, and other life threatening challenges. Ari has had quite a bit of bleeding issues and his kidneys aren’t working well right now.

The hope is that over the next week or two he’ll start to recover more on ECMO. Assuming he does, they’ll be able to turn down the settings and ask for participation from his heart to operate his circulation along with the machine.

Kind of like training wheels, at first they’ll keep the wheels on and hold the seat while he figures out how to pedal. Then they’ll take the wheels off if the pedaling and balance look ok. And then, at the very end, they’ll let go of the seat and see if he rides by himself.

He’s still near the beginning. Very shaky on the training wheels with millions of land mines in between where we are now and where we need to get to.

As for right now, I’m sitting with him in CICU with the Red Sox on. Bruins were on last night. Will put the Celtics on for him at 6. Have been listening to some Grateful Dead. And we’ve been reading all the sports articles on ESPN.

If he does get off ECMO, he’ll have the typical huge hills to climb coming off of a cardiac arrest and a long time sedated and tubed, but he’ll also still have his biggest challenge waiting for him: rejection. They were throwing the anti-rejection book at him before the arrest. Now everyone is putting their heads together to figure out how to throw it at him harder.

Meanwhile, he rests. We wait. We hope that he pees, stops bleeding, and the rest of his body and organs settle out so we can see if his heart is ready to participate or not. He also has no immune system right now. None. We hope for no infections or other complications. One more thing right now would be devastating.

On another note, I’m also at a loss for words with the outpouring of support (I know that sounds cliche, but that’s what it’s been) to allow us to focus on Ari while we also demolish and build a new house from scratch, and figure out where we, Lexi, and Eli will live. Still working on that as of now. Meanwhile, we’ve spent our last night in the house we loved so much.

For those of you that have called, messaged, emailed, and sent smoke signals we really appreciate it. It’s a little hard to respond to – or even keep track of – the messages and support people have sent our way, but it’s been amazing. We read them all and it means so very much.

With Ari, the other kids, and the house, we have been lifted up by everyone. It’s awful to have to go through this – terrible to have to watch your child suffer. Yet as we go from day to day, we continue to learn so much about kindness and love.

Our sincerest hope for Ari is that we can can spend the rest of our lives teaching him about what we’ve learned from all of you.

---
Other ways to donate:
The Greg Hill Foundation* is a certified 501c3 charitable organization. All funds will go directly to the family with no fees, including no credit card fees. Donation tax deductible. If you are so inclined to help, here is the link: https://www.thegreghillfoundation.org/beneficiary/the-schultz-family/

Prefer to mail a donation? Make out to Erica and Michael Schultz. Mail to: Linda Stritch, P.O. Box 1567, Wells, ME 04090.

We also learned that The Paper Store and perhaps others will be matching donations to a good extent. Truly, we don’t even know how to express our gratitude for this help.

P.S. For a guy at a loss for words it seems like I got out about 900. Be very afraid if I get on a roll…

*quick note about the Greg Hill Foundation as people have been asking quite a bit. Stow resident and WAAF morning show legend Greg Hill founded the organization in 2010. Its mission is to respond to the immediate needs of families that have been touched by tragedy. After losing the house and learning that insurance does not cover this kind of loss, we needed this kind of support.

---------------------------------------
Update 3/23/2017 - Things have taken a turn for the worse for Ari. It has been less than three weeks since he received his new heart. Unfortunately, his body has not responded well to the transplant and he has been very sick.

At 8:20pm last night, Ari went into cardiac arrest. He was given CPR for 30 minutes then placed on life support. At that time (and as of now) his new heart was not beating. Doctors are evaluating options and determining what the next possible steps are. Ari's dad was with Ari the whole time, holding his hand and talking to him.

It is heartbreaking that this family is experiencing such difficulty. Please send positive thoughts and pray for a miracle for this beautiful boy and his family.

Thank you again for all your support.

-------------------------------------------------------

Major Update 3/20/2017 - Ari is fighting rejection and the Schultzes just found out their home is mold infested and needs to be torn down... Help is needed now more than ever.


The saying home is where the heart is, just got a whole new meaning.

Five-year-old Ari Schultz finally received a new heart after 211 days on the transplant list, and now he is in the fight of his life. He’s experiencing some acute rejection, but he’s working hard to get well, and doctors are hopeful that intense treatment will help. Ari wants nothing more than to go home. But while his parents stayed bedside in the hospital for more than 100 days waiting for his new heart, lurking water damage took hold and ravaged their house. What started with the Shultzes finding mushrooms growing out of a light switch, turned this week into their beautiful house being called a total tear down, with insurance only covering a shockingly small portion.

The Schultzes need to get Ari well, but at the same time, they need to find a place to live, and then need to rebuild their house for their family, including their other two small children Lexi and Eli.

This is not a family who asks for help. In fact, last year the Schultzes spent their spare time running a Golf Tournament and raising $100,000 to help families with pediatric cardiac disease served by the Ethan Lindberg Foundation. Then they started a campaign to save 100,000 lives by getting 12,500 people to become organ donors - all while Ari waited patiently, hoping for his new heart.

They’ve always been reluctant to accept help, but now it’s time. Every amount adds up and between the medical situation and the house, they can use all the help we can get for them. Thank you so much in advance spreading the word and helping this selfless and deserving family.

They are also looking for people to donate goods and services:
-Architect / designer to put together plans for our house
-Demolition and removal
-Concrete / foundation contractor
-Construction dumpsters and waste
-Lumber and materials
-Electrical contractor
-Plumbing contractor
-HVAC and materials
-Windows and doors (millwork)
-Plaster and dry wall contractor
-Cabinets
-Fireplace materials (stove)
-Flooring contractor
-Appliances
-Roofing contractor
-Painting contractor
-Landscaping contractor
-Shed for storing everything we own
-Off-site storage
-House rental in the area for all of us while we build

If you can donate these services, or if you have someone who will donate them, please contact Jerry Rubin or Andrea Rubin, their amazing general contractor at Elite Installations,  jerryrubin5@yahoo.com or arubin@eliteinstallationsllc.com 
 
There is a more detailed update on Ari and their home posted on www.echoofhope.org.
Thank you again for all your support.
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Update 5
Posted by Danny Rosenberg
2 days ago
   Share
1
1
UPDATE - 4-22-2017:
Ari has been breathing on his own since April 15 at 10:40 a.m.

He’s pretty stoned on all the narcotics he needed to keep him pain free and paralyzed while he was on life support. It’s going to take a while to wean off. Ari’s cardiologist said, “He might go to first grade on methadone, but I’ll still consider it a victory.”

His heart took quite the assault during the arrest, CPR, and life support. It’s wait-and-see on how it will recover, but the doctors are hopeful. Right now it doesn’t look great, but it doesn’t look too bad either.

His real enemy will be rejection. This fight is still in front of him. In the ICU we can stop rejection cold, but eventually medications Ari can take at home have to start holding the line. His anti-rejection regimen here forward will be intense. How it all turns out is up to Ari.

Meanwhile, he was watching the Red Sox play Tampa Bay on Saturday. He wasn’t saying much. When Corey Dickerson hit a home run for the Rays, Ari said, “Oh maaan.” We just watched the teaser trailer for Star Wars Episode 8. I asked him, “You remember Episode 8 right?” He said, “Yeah, The Last Jedi.”

And we got our first smiles today.

That’s our boy.

SAVE 100,000 lives! It's National Donate month and the Schultz family has started a campaign to save 100,000 lives by getting 12,500 people to register to be organ donors. See more here: https://echoofhope.org/
and sign up today to help save lives!

***House Update***

We are completely amazed by the shows of financial and housing support for us when we lost everything. We have a great team working on building a safe and comfortable new house similar to our old one right on the same spot.

People asked us why we didn’t just move. We thought about it, but we couldn’t leave Ari’s Make a Wish basketball court with him still in the hospital.

If you want to help with the house rebuild in any way (we still need goods and services) contact Dan James at djames@erland.com or 781-844-5688.
+ Read More
Update 4
Posted by Danny Rosenberg
18 days ago
   Share
6
6
UPDATE 4-6-2017: Please see below. Mike just sent out the following update I wanted to share with all of you. Thank you all for your continued support and inspiring messages. Ari is a fighter!

----------- Mike's Update -----------
Gunfight at the O.K. Corral
Earlier this week Ari’s blood pressure was regularly bottoming out. By 10 a.m. Tuesday his systolic pressure had dipped into the 30s. I told Erica on the phone. She said, “Is this it? Should I rush in?”

Ari was struggling mightily. So much so the doctors had the conversation with us about how Ari wouldn’t survive CPR and ECMO again. Those are off the table. He needs to keep it together. Last of the 9 lives. Gunfight at the O.K. Corral.

Then, as he has done so often in his short life, he dug in and attacked, pressing the enemy with great fury and relentless determination.

Now he’s awake(!), alert, and royally pissed off. He still has the breathing tube in and hates it. He’s on enough narcotics to stop an elephant. (No joke.) Pressures are better but still concerning. He knows he can’t talk, so he keeps mouthing “Help me. Help me.”

So that’s what we’re doing. I just finished the night shift. We watched the Red Sox and Celtics, sang Scarlet/Fire, Tin Man and Rosanna, and tried to keep calm and…no, screw calm. Stay pissed and keep fighting.

Erica is with him now as we literally drag the rejection causing antibodies from his blood. I’m in the cafeteria grabbing breakfast and getting ready to dive back in. Dad just got here to tell Ari bad jokes and keep the Schultz legacy alive.

From here forward Ari has to hold the line, stay alert and moderately upset, and wean sedation in preparation for taking the breathing tube out. Can’t be on so much morphine that you don’t care about breathing once the tube is out. He needs to be ready to rock. Could take days or who knows how long. That’s a lot of Bruins highlights.

And he’s by no means out of any woods. When we ask the team what to expect in the days to come, they tell us they’re thinking more hour by hour. One thing at a time. Ari has been throwing curveballs left and right, including this morning with fevers and smaller blood pressure swings.

Meanwhile, we’re hammering at the rejection with every med and therapy possible. If it can be pushed back it will be. As we do this, infection becomes a dangerous threat. No immune system at all. No choice. This is the path. And a long path it is.

Still first things first, let’s get that tube out. Time to see what the man has to say.

***
Brief house update:

We have a rental in Sudbury! 5 minutes from the house. Starts May 1. Will figure out mild homelessness until then.
We’re putting plans together and permitting for the new house now. Planning to put something up very similar, just safer and better engineered. Permitting hopefully done in 8 weeks. Then we can get started.

As long as Ari walks out the front door of the hospital, though, we’ll be fine. The house is just a house. Home is where your family is.

--- Note: They chose to post this picture of Ari to raise awareness for the need for people to register as organ donors during #DonateLifeMonth. Approximately 300 pediatric heart transplants are performed each year. Too many children don’t survive the wait. Register here: #DonateLife.
Please Register: #DonateLifeMonth
+ Read More
Update 3
Posted by Danny Rosenberg
29 days ago
   Share
Mike Shultz has updated EchoOfHope.org - his amazing blog about Ari “Danger” Shultz and family. Please see below for the post in it’s entirety. Ari is an incredible fighter. We have been sending all your messages of inspiration and support to them - thank you! We will update you as we get information. All my thanks, Danny

“Loss for Words” by Mike Schultz

Nobody should ever have to hold their 5-year-old’s hand through a cardiac arrest. 20 minutes felt like a second, and like forever. I am so grateful, however, that I could be there with him the whole time talking to him. I’m glad I could find the words for him, and have him to focus on me and not what was happening to him.

Right now, I got nothin’ much. At least nothing eloquent or insightful. Loss for words. This just all really sucks.

Ari went into cardiac arrest due to severe rejection at 8:20 p.m. on Wednesday, March 22. His heart rate first rose and then started to drop slowly before his heart gave out. When it reached about 70 beats per minute, they started CPR and the process of racing to the cardiac intensive care unit for emergency surgery to place him on ECMO, or heart/lung life support. The machines are now doing all the work of his heart. Ari’s is resting.

Given the acute rejection that had recurred and the trauma of the arrest, CPR, and emergency surgery, his heart did not beat for approximately 36 hours. The doctors told us this was to be expected. They hoped it would begin beating again before 72 hours. It did.

However, it’s not doing any work inside his body. Life support is doing everything. Being on ECMO carries with it very serious risks of bleeding, clotting, liver, kidney, lung, and other life threatening challenges. Ari has had quite a bit of bleeding issues and his kidneys aren’t working well right now.

The hope is that over the next week or two he’ll start to recover more on ECMO. Assuming he does, they’ll be able to turn down the settings and ask for participation from his heart to operate his circulation along with the machine.

Kind of like training wheels, at first they’ll keep the wheels on and hold the seat while he figures out how to pedal. Then they’ll take the wheels off if the pedaling and balance look ok. And then, at the very end, they’ll let go of the seat and see if he rides by himself.

He’s still near the beginning. Very shaky on the training wheels with millions of land mines in between where we are now and where we need to get to.

As for right now, I’m sitting with him in CICU with the Red Sox on. Bruins were on last night. Will put the Celtics on for him at 6. Have been listening to some Grateful Dead. And we’ve been reading all the sports articles on ESPN.

If he does get off ECMO, he’ll have the typical huge hills to climb coming off of a cardiac arrest and a long time sedated and tubed, but he’ll also still have his biggest challenge waiting for him: rejection. They were throwing the anti-rejection book at him before the arrest. Now everyone is putting their heads together to figure out how to throw it at him harder.

Meanwhile, he rests. We wait. We hope that he pees, stops bleeding, and the rest of his body and organs settle out so we can see if his heart is ready to participate or not. He also has no immune system right now. None. We hope for no infections or other complications. One more thing right now would be devastating.

On another note, I’m also at a loss for words with the outpouring of support (I know that sounds cliche, but that’s what it’s been) to allow us to focus on Ari while we also demolish and build a new house from scratch, and figure out where we, Lexi, and Eli will live. Still working on that as of now. Meanwhile, we’ve spent our last night in the house we loved so much.

For those of you that have called, messaged, emailed, and sent smoke signals we really appreciate it. It’s a little hard to respond to – or even keep track of – the messages and support people have sent our way, but it’s been amazing. We read them all and it means so very much.

With Ari, the other kids, and the house, we have been lifted up by everyone. It’s awful to have to go through this – terrible to have to watch your child suffer. Yet as we go from day to day, we continue to learn so much about kindness and love.

Our sincerest hope for Ari is that we can can spend the rest of our lives teaching him about what we’ve learned from all of you.

What's ECMO: http://www.childrenshospital.org/centers-and-services/extracoporeal-membrane-oxygenation-ecmo-program
---
Other ways to donate:
The Greg Hill Foundation* is a certified 501c3 charitable organization. All funds will go directly to the family with no fees, including no credit card fees. Donation tax deductible. If you are so inclined to help, here is the link: https://www.thegreghillfoundation.org/beneficiary/the-schultz-family/

Prefer to mail a donation? Make out to Erica and Michael Schultz. Mail to: Linda Stritch, P.O. Box 1567, Wells, ME 04090.

We also learned that The Paper Store and perhaps others will be matching donations to a good extent. Truly, we don’t even know how to express our gratitude for this help.

P.S. For a guy at a loss for words it seems like I got out about 900. Be very afraid if I get on a roll…

*quick note about the Greg Hill Foundation as people have been asking quite a bit. Stow resident and WAAF morning show legend Greg Hill founded the organization in 2010. Its mission is to respond to the immediate needs of families that have been touched by tragedy. After losing the house and learning that insurance does not cover this kind of loss, we needed this kind of support.
Ari & Mike-Celtics game before hospiptal
+ Read More
Update 2
Posted by Danny Rosenberg
1 month ago
   Share
Things have taken a turn for the worse for Ari. It has been less than three weeks since he received his new heart. Unfortunately, his body has not responded well to the transplant and he has been very sick.

At 8:20pm last night, Ari went into cardiac arrest. He was given CPR for 30 minutes then placed on life support. At that time (and as of now) his new heart was not beating. Doctors are evaluating options and determining what the next possible steps are. Ari's dad was with Ari the whole time, holding his hand and talking to him.

It is heartbreaking that this family is experiencing such difficulty. Please send positive thoughts and pray for a miracle for this beautiful boy and his family.

Thank you again for all your support.
+ Read More
Read a Previous Update
Carolyn Bensky Campeau
1 month ago

Has anyone thought about contacting Ellen DeGeneres? She has helped so many people and families who are facing adversity. I certainly think it would be worth having someone do this.

+ Read More
Austin Roberts
1 month ago

Hi, I'm the owner of a General Contracting Company located in Boston. A friend of mine passed along your page. 5 years ago my sister was in a car accident that left her paralyzed from the waste down. We did the same thing and got a lot of support. I would like to return the gesture and am willing to help out. I have several vanities, nice cherry kitchen cabinets, tile, paint, and other construction materials. I'm willing to donate time as well. Please give me a call at 617.543.0942 to discuss further. Thank you. Austin Roberts Austin Roberts Construction Inc.

+ Read More
Jenifer Kochis Lembo
1 month ago

I agree that contacting Ellen is worth a shot. Here is the link:http://www.ellentv.com/be-on-the-show/432

+ Read More
Michelle Shelton Rosier
1 month ago

Contact me for free, certified house plans that we could make changes to to make more attractive to your family. Architect certified.

+ Read More
Kelly Butler
1 month ago

I have a 5 year old son who was also born with HLHS! These are the toughest kiddos around... Big hugs to you guys from another heart family:)

+ Read More
Holly Holsombake Pick
1 month ago
8
8

Ari, you have been such an inspiration to me and my husband. We love you and are praying for you. You are my superhero!!

+ Read More
Debbie Davis
1 month ago
6
6

I emailed the Ellen Show about this family and encourage others to do the same...if enough people bring it to their attention then maybe this story will stand out above others. The link is below in comments - also here - link:http://www.ellentv.com/be-on-the-show/432. Sending prayers for this family during this difficult time!

+ Read More
Shelby DeLisle
27 days ago
3
3

I would like your whole family to know that I have been thinking of you all non stop and sending prayers everyday. My son was born February 6, 2017, 8 weeks early with Pulmonary Atresia. He was very strong right away and then went into cardiac arrest on day 9 when they tried to extubate him. They did CPR for 20 minutes and then emergently put him on ECMO in the NICU. Once he stabilized on ECMO they moved him up 2 floors to the CICU, him making that journey was such a relief. Unfortunately my little Jax just was too tiny and it was harder on him for us to let him keep trying to fight as his kidneys were failing and his circulation was very very poor. My Jax went to meet Jesus when he was 10 days old while mommy and daddy held him close. I don't know the exact feelings you are having as everyone is different, but reading your story I had so many flashbacks and I absolutely know every step and every process they are taking you through. I have prayed to God and asked my Jax man to keep a close watch over your family and see that Ari pulls through, he is older and so very strong. All of my thoughts and prayers are with you all during this.

+ Read More
Donna Jean Townsend-Minor
1 month ago
3
3

Do you have any idea where your precious boys new heart came from? Do they tell any details when this happens?

+ Read More
Genna Goldberg Rosenberg
1 month ago
2
2

Hi Donna - they keep this info confidential, and I know the family is keen to keep it that way. Such a precious gift for Ari to have this strong heart that lives on... they are incredibly sensitive to the donor family for their loss.

+ Read More
Natalya Edwards
18 days ago
1
1

Keep fighting, sweet boy! You are in my thoughts and prayers. You have awesome parents that will be with you every step.

+ Read More
Carol Hauer
18 days ago
1
1

Ari, you and your family are in my prayers every day. You will come through this, Ari, and you will use your strong, healthy body to help others deal with their own challenges in life. You'll know how to give them courage and determination because those are the gifts you have yourself. You are in my mind. Sending love.

+ Read More
Vivien Singer
1 month ago
1
1

I am incredibly hopeful the doctors will come up with something. As hard as it must be, please stay strong. We are all thinking of you and sending positive vibes.

+ Read More
Alissa North
1 month ago
1
1

contacting Ellen is worth a shot. Here is the link:http://www.ellentv.com/be-on-the-show/432 Please do!!! I just contacted Ellen on the link and mentioned this family!! Please do the same, his family needs support.❤

+ Read More
Jetske Richard
1 month ago
1
1

Want to donate from.the Netherlands but have no creditcard... how can I help apart from sharing your amazing story?? Love for Ari from Holland

+ Read More
Alisa Anton
25 days ago

I've already contacted Ellen via her submission page, sent a tweet and try to comment as much as possible on their IG page. If there's more of us doing that, it'll draw more attention. Please, let's all do what we can to help Ari and his beautiful family!

+ Read More
Leroy Lutu
28 days ago

Hey Ari! I have heard all about your story online and on TV. You are so strong and such an inspiration! I can tell by watching you in the video with your Mom and Dad that you have an incredible baseball swing and will be a great little ball player one day! I just know it! Keep being strong like you have been and thank you for being my inspiration and Hero. Love from Seattle, buddy! Your friend, Leroy

+ Read More
Brandon Lee
18 hours ago

Thank you for the update. I've been thinking about everything a LOT recently - so glad to hear things are relatively calm right now.

+ Read More
Tiffany Gunderson
3 days ago

Hi is there any updates please ? I have dreams of this sweet child . It weighs heavy on me

+ Read More
Jess Indigo
17 days ago

I have shared your story and will donate more as soon as possible. This little boy has touched my heart and I think about him daily and share your fight. Hang in there, Ari!

+ Read More

$302,986 of $500k goal

Raised by 4,951 people in 1 month
Created March 10, 2017
Danny Rosenberg  
on behalf of Michael Schultz
GT
$1,000
GoFundMe Team
25 days ago

We’re excited to be able to Give Back to campaigns that have touched us here at GoFundMe. We wish you the best, - The GoFundMe Team

$2,000
JJ Berney
1 month ago
8
8

Wishing Ari continued improvement and a beautiful new bedroom in a new house to call his own. The Schultz family is an inspiration to us all. Michelle and JJ Berney Ruby, Eva, and Sam

$1,000
Anonymous
1 month ago
6
6
$1,000
Anonymous
1 month ago
5
5
$1,000
Anonymous
1 month ago
5
5
RA
$1,000
Rob & Katie Alexander
1 month ago
5
5
LS
$1,000
Leslie G. Shumsker
1 month ago
5
5
$1,000
Anonymous
1 month ago
4
4
AB
$1,000
Abbie Breslin
1 month ago
4
4
MG
$25
Maddie & Griffin Gauthier
18 days ago
3
3

We already donated once before but we read the update and wanted to help a little bit more. ❤ #lethimsaynaughtywordswhenthetubeisout #hedeservesit

Carolyn Bensky Campeau
1 month ago

Has anyone thought about contacting Ellen DeGeneres? She has helped so many people and families who are facing adversity. I certainly think it would be worth having someone do this.

+ Read More
Austin Roberts
1 month ago

Hi, I'm the owner of a General Contracting Company located in Boston. A friend of mine passed along your page. 5 years ago my sister was in a car accident that left her paralyzed from the waste down. We did the same thing and got a lot of support. I would like to return the gesture and am willing to help out. I have several vanities, nice cherry kitchen cabinets, tile, paint, and other construction materials. I'm willing to donate time as well. Please give me a call at 617.543.0942 to discuss further. Thank you. Austin Roberts Austin Roberts Construction Inc.

+ Read More
Jenifer Kochis Lembo
1 month ago

I agree that contacting Ellen is worth a shot. Here is the link:http://www.ellentv.com/be-on-the-show/432

+ Read More
Michelle Shelton Rosier
1 month ago

Contact me for free, certified house plans that we could make changes to to make more attractive to your family. Architect certified.

+ Read More
Kelly Butler
1 month ago

I have a 5 year old son who was also born with HLHS! These are the toughest kiddos around... Big hugs to you guys from another heart family:)

+ Read More
Holly Holsombake Pick
1 month ago
8
8

Ari, you have been such an inspiration to me and my husband. We love you and are praying for you. You are my superhero!!

+ Read More
Debbie Davis
1 month ago
6
6

I emailed the Ellen Show about this family and encourage others to do the same...if enough people bring it to their attention then maybe this story will stand out above others. The link is below in comments - also here - link:http://www.ellentv.com/be-on-the-show/432. Sending prayers for this family during this difficult time!

+ Read More
Shelby DeLisle
27 days ago
3
3

I would like your whole family to know that I have been thinking of you all non stop and sending prayers everyday. My son was born February 6, 2017, 8 weeks early with Pulmonary Atresia. He was very strong right away and then went into cardiac arrest on day 9 when they tried to extubate him. They did CPR for 20 minutes and then emergently put him on ECMO in the NICU. Once he stabilized on ECMO they moved him up 2 floors to the CICU, him making that journey was such a relief. Unfortunately my little Jax just was too tiny and it was harder on him for us to let him keep trying to fight as his kidneys were failing and his circulation was very very poor. My Jax went to meet Jesus when he was 10 days old while mommy and daddy held him close. I don't know the exact feelings you are having as everyone is different, but reading your story I had so many flashbacks and I absolutely know every step and every process they are taking you through. I have prayed to God and asked my Jax man to keep a close watch over your family and see that Ari pulls through, he is older and so very strong. All of my thoughts and prayers are with you all during this.

+ Read More
Donna Jean Townsend-Minor
1 month ago
3
3

Do you have any idea where your precious boys new heart came from? Do they tell any details when this happens?

+ Read More
Genna Goldberg Rosenberg
1 month ago
2
2

Hi Donna - they keep this info confidential, and I know the family is keen to keep it that way. Such a precious gift for Ari to have this strong heart that lives on... they are incredibly sensitive to the donor family for their loss.

+ Read More
Natalya Edwards
18 days ago
1
1

Keep fighting, sweet boy! You are in my thoughts and prayers. You have awesome parents that will be with you every step.

+ Read More
Carol Hauer
18 days ago
1
1

Ari, you and your family are in my prayers every day. You will come through this, Ari, and you will use your strong, healthy body to help others deal with their own challenges in life. You'll know how to give them courage and determination because those are the gifts you have yourself. You are in my mind. Sending love.

+ Read More
Vivien Singer
1 month ago
1
1

I am incredibly hopeful the doctors will come up with something. As hard as it must be, please stay strong. We are all thinking of you and sending positive vibes.

+ Read More
Alissa North
1 month ago
1
1

contacting Ellen is worth a shot. Here is the link:http://www.ellentv.com/be-on-the-show/432 Please do!!! I just contacted Ellen on the link and mentioned this family!! Please do the same, his family needs support.❤

+ Read More
Jetske Richard
1 month ago
1
1

Want to donate from.the Netherlands but have no creditcard... how can I help apart from sharing your amazing story?? Love for Ari from Holland

+ Read More
Alisa Anton
25 days ago

I've already contacted Ellen via her submission page, sent a tweet and try to comment as much as possible on their IG page. If there's more of us doing that, it'll draw more attention. Please, let's all do what we can to help Ari and his beautiful family!

+ Read More
Leroy Lutu
28 days ago

Hey Ari! I have heard all about your story online and on TV. You are so strong and such an inspiration! I can tell by watching you in the video with your Mom and Dad that you have an incredible baseball swing and will be a great little ball player one day! I just know it! Keep being strong like you have been and thank you for being my inspiration and Hero. Love from Seattle, buddy! Your friend, Leroy

+ Read More
Brandon Lee
18 hours ago

Thank you for the update. I've been thinking about everything a LOT recently - so glad to hear things are relatively calm right now.

+ Read More
Tiffany Gunderson
3 days ago

Hi is there any updates please ? I have dreams of this sweet child . It weighs heavy on me

+ Read More
Jess Indigo
17 days ago

I have shared your story and will donate more as soon as possible. This little boy has touched my heart and I think about him daily and share your fight. Hang in there, Ari!

+ Read More
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