Ari's New Heart Medical Fund

$269,637 of $500k goal

Raised by 4,362 people in 16 days
Danny Rosenberg
on behalf of Michael Schultz
 TARZANA, CA
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.

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

---------
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.
+ Read More
Update 2
Posted by Danny Rosenberg
2 days 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
Update 1
Posted by Danny Rosenberg
6 days ago
   Share
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. Please contact them at https://echoofhope.org/contact/ if you have any of the following:
• Place to live while house is rebuilt, so Ari can go to a home.
• Lumber / Materials
• Windows
• Shed to store everything
• Plumber / HVAC
• Electrician
• Painting
• Dry wall / plaster
• Flooring
• Roofer
• Foundation / concrete
• Architect
• Landscape / fence
• and more…

There will be a more detailed update on Ari and their home posted on www.echoofhope.org soon.
Thank you again for all your support.
Ari speaks about going home post surgery
+ Read More
Read a Previous Update
Carolyn Bensky Campeau
5 days 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
Jenifer Kochis Lembo
5 days 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
Austin Roberts
1 day ago
9
9

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
Kelly Butler
5 days ago
6
6

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
14 days ago
5
5

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
4 days ago
4
4

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
Michelle Shelton Rosier
4 days ago
3
3

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

+ Read More
Donna Jean Townsend-Minor
15 days 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
Vivien Singer
2 days 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
Genna Goldberg Rosenberg
15 days ago
1
1

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
Sarah Elizabeth Wilson
7 hours ago

♥ Sending love and positive thoughts little guy... you can do it x

+ Read More
Heather Webster
11 hours ago

Praying For you Ari!!!!!!! you are a strong little man!!!!! praying you pull through this!!! much love , prayers and hugs!!!

+ Read More
Kim Amundson Carlin
13 hours ago

Are there any updates on Ari?! We can't stop thinking about him.

+ Read More
Michelle Madden
16 hours ago

Oh Ari you beloved boy. I am crying so hard bc you have touched so many of us. You are so precious and so brave. I pray for you and hope you pull through. The world needs more tender souls like you. I don't even know you but I love you.

+ Read More
Doreen Elwell
20 hours ago

I am praying for you daily to St Bernadette, I hope a miracle happens and this lovely boy is brought back to good health. Keep hopeful... X

+ Read More
Rebecca Ouellette
1 day ago

This breaks my heart...I can't stop thinking about Ari & your whole family. I will continue to pray for Ari ❤

+ Read More
Emi Kremer
1 day ago

Be brave, Ari!

+ Read More
Dorothy Parker
1 day ago

You are in my prayers. My daughter Michaela had a heart transplant in October. I found mold in our home and she was unable to return there. Last week we finally got a new home after staying with our son and family since transplant. Keep praying and keep your faith.

+ Read More
Judith Andrade
2 days ago

I do not know the Schultz family but after seeing video of Ari learning about his new heart, I was so very touched and fell in love with Ari immediately!!! I am following Ari's incredible journey and am praying so hard for this wonderful, sweet, brave boy!! Sending so much love and so many prayers to Ari and his wonderful parents!!

+ Read More
Kim Amundson Carlin
2 days ago

I am in tears reading this latest update. Ari, we are rooting for you from Poughkeepsie, NY. We hope you recover and get to see a baseball game this summer! ❤️ Healing thoughts being sent your way.

+ Read More

$269,637 of $500k goal

Raised by 4,362 people in 16 days
Created March 10, 2017
Danny Rosenberg  
on behalf of Michael Schultz
$25
Anonymous
4 mins ago
$5
Ryan Jackson
16 mins ago
$100
Anonymous
21 mins ago
BM
$20
Bibiana Magana
1 hour ago

God is great! He always sends his help. He has a plan so just stay strong.... even when you feel you can no longer continue, he will walk you through it.

$50
Anonymous
1 hour ago
GV
$25
George Varga
1 hour ago
$50
Jennifer Lanam
1 hour ago
$25
Anonymous
1 hour ago
KE
$100
Kelly Ehrenman
1 hour ago
$100
Anonymous
1 hour ago
Carolyn Bensky Campeau
5 days 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
Jenifer Kochis Lembo
5 days 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
Austin Roberts
1 day ago
9
9

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
Kelly Butler
5 days ago
6
6

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
14 days ago
5
5

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
4 days ago
4
4

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
Michelle Shelton Rosier
4 days ago
3
3

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

+ Read More
Donna Jean Townsend-Minor
15 days 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
Vivien Singer
2 days 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
Genna Goldberg Rosenberg
15 days ago
1
1

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
Sarah Elizabeth Wilson
7 hours ago

♥ Sending love and positive thoughts little guy... you can do it x

+ Read More
Heather Webster
11 hours ago

Praying For you Ari!!!!!!! you are a strong little man!!!!! praying you pull through this!!! much love , prayers and hugs!!!

+ Read More
Kim Amundson Carlin
13 hours ago

Are there any updates on Ari?! We can't stop thinking about him.

+ Read More
Michelle Madden
16 hours ago

Oh Ari you beloved boy. I am crying so hard bc you have touched so many of us. You are so precious and so brave. I pray for you and hope you pull through. The world needs more tender souls like you. I don't even know you but I love you.

+ Read More
Doreen Elwell
20 hours ago

I am praying for you daily to St Bernadette, I hope a miracle happens and this lovely boy is brought back to good health. Keep hopeful... X

+ Read More
Rebecca Ouellette
1 day ago

This breaks my heart...I can't stop thinking about Ari & your whole family. I will continue to pray for Ari ❤

+ Read More
Emi Kremer
1 day ago

Be brave, Ari!

+ Read More
Dorothy Parker
1 day ago

You are in my prayers. My daughter Michaela had a heart transplant in October. I found mold in our home and she was unable to return there. Last week we finally got a new home after staying with our son and family since transplant. Keep praying and keep your faith.

+ Read More
Judith Andrade
2 days ago

I do not know the Schultz family but after seeing video of Ari learning about his new heart, I was so very touched and fell in love with Ari immediately!!! I am following Ari's incredible journey and am praying so hard for this wonderful, sweet, brave boy!! Sending so much love and so many prayers to Ari and his wonderful parents!!

+ Read More
Kim Amundson Carlin
2 days ago

I am in tears reading this latest update. Ari, we are rooting for you from Poughkeepsie, NY. We hope you recover and get to see a baseball game this summer! ❤️ Healing thoughts being sent your way.

+ Read More
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