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Getting ready for a trip to Duke

photo (3)June 9th Update: dan update: We saw the pulmonologist last week and he believes Idan’s lungs are doing very well and should be strong enough for transplant. This is great news, and should allow us to move forward quickly once we choose a doctor/hospital. We are getting ready for a trip to Duke to visit one of the expert transplant doctors for Hyper IgM and other immune deficiencies. Wish us luck!

Fundraising update: With your help, we’ve raised almost $40,000 – nearly half of our goal – in only a few days! Idan’s story has been read by over 1,000 people, 261 generously donated, and hundreds more have shared Idan’s story through Facebook, email, and Twitter! Through your efforts, we’ve even been put in touch with another doctor who has performed a successful Hyper IgM transplant. Thank you so much!

Idan’s Story goes public on Facebook

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You all know our son Idan, and many of you have followed his adventures on Facebook. Idan now needs your help! Last month, after a 21 day stay in the ICU, Idan was diagnosed with Hyper IgM, a very rare life-threatening genetic disorder that plagues his immune system. We need your help, so he can live a full, long and healthy life: Please see here:https://www.youcaring.com/fundraiseforidan and feel free to Like, Share and pass along. More details and updates to follow. See here for original Facebook post.

How we got here: Idan’s Story

969070_10100769864402362_917188301_n\How we got here: Idan’s Story

Last July, we stood in front of a crowded room and introduced our baby boy to the world.  We spoke of the long journey that we took to get to this moment in our lives.  Akiva’s quest to find a brain surgeon willing to and capable of operating on his brain stem to remove a tumor threatening his life, and unleashing the superhero within.  Amanda’s pursuit of her childhood dreams.  Our love story.  And now, Idan.  A child born to parents who could not be more grateful, more blessed, more thrilled to begin this new journey as a family.  Hence Idan’s name.  Idan is Hebrew for “time,” or “era.”  We knew our little guy would be unusually strong, and we wanted him to have an equally strong name.  What could be stronger and more precious than time? 

Nearly a year later, Idan has proved us right.  He is precious, uniquely strong, extremely brave, and has began his own journey. Idan has been diagnosed with a very rare and life-threatening immune deficiency disorder that affects only 2 in 1,000,000 people.  This is his story, and how you can help. 

In April, Idan started breathing very quickly.  There were no other symptoms to cause alarm.  He played, ate, and seemed perfectly normal, except for his respiratory rate. We went back and forth to the doctor, everyone believing it was a sneaky virus that would take its course and go away.  When two weeks passed and Idan began looking fatigued, we took him back to the pediatrician for a second x-ray.  We were rushed to the hospital, and Idan was taken to the pediatric ICU to be given oxygen.  He was hospitalized for several days before we found out the culprit, a very rare form of pneumonia caused by the most common of fungus that lives in nearly all of us – PCP.  It wreaked havoc on his baby lungs, and he had to be placed on a ventilator for 13 days to help him breathe.  The doctors busily ran tests to determine why he developed PCP, a condition that usually affects those without an immune system.  But he was our healthy 8 month old boy, right?

We soon discovered he had a severe immune deficiency, which made him uniquely susceptible to this aggressive fungus that threatened to take his life.  We stood by his bedside, for 21 days, wearing gowns, masks and gloves, unable to hold, kiss, or even touch him.  Despite all that, and despite tubes invading every inch of his body, Idan courageously found strength to smile, even to laugh.  We stood by his bed and read to him, sang to him, danced for him, and deep down, we knew that he was the one comforting us the entire time.  His smiles and intuitive stares, ones which belonged to a much older adult, not a child, told us he was strong and going to survive the PCP and conquer his immune deficiency.  After three excruciatingly long weeks, Idan’s lungs finally recovered.  He regained his strength and was discharged from the hospital.  

Idan came home and resumed many of his normal routines, and you would never know he spent weeks in the hospital fighting for his life.  But after Idan was discharged from the hospital, we faced a new challenge – diagnosing the underlying problem with his immune system that made him uniquely susceptible to the fungus that causes PCP.  It was not long before Idan was diagnosed with Hyper IgM, an extremely rare and life-threatening genetic primary immune deficiency disorder where the immune system fails to fight against even the most harmless of germs – hence the PCP.  We have no family history of the disease and never saw it coming.

Today, we are treating Idan’s Hyper IgM with regular weekly infusions of immunoglobulin replacement therapy and antibiotics to prevent reoccurrences of the PCP.  This will protect him from the majority of infections, bacteria and viruses, but cannot protect him against everything.  To date, most individuals with Hyper IgM have not survived past their third decade of life, and are often plagued with recurrent infections and high incidence of cancer.  We are hopeful, however, that the medical advancements made in the last ten years with stem cell transplantation in children with Hyper IgM will allow Idan to live a normal healthy life.  When his lungs have fully healed, Idan will need a stem cell transplant, which, though it comes with its own set of risks and challenges, is the only known cure.  Thankfully, we have already found a donor who is a perfect match.

How You Can Help

We need your help raising funds to enable us to make sure that, no matter what happens to us, Idan has the best possible medical care, a successful transplant, and enough funds to cover the medical costs he will incur along the way.  This will help to pay for Idan’s hospitalization for the PCP, extensive genetic testing, weekly infusions of immunoglobulin, frequent trips to the pediatrician, immunologist, pulmonologist, and transplant team, as well as the cost of a stem cell transplant and future hospitalization.   We know we cannot do this alone, and, to that end, we have set up this fundraising page for Idan. 

Please post, send to your family and friends, and share liberally.  We appreciate any and all support that you can provide.  Please note that any gifts to Idan are not tax deductible. If you would like to pray for Idan, his full hebrew name is Idan Yarden Ben Esther.

We will literally go to the ends of the earth to find the best medical care for Idan. This disorder is so rare that there are only a few doctors around the world that have even encountered it, let alone know how to treat it effectively.  We are hopeful that, with your help, Idan will have access to these experts and will be cured.

Thank you,

Amanda, Akiva & Idan

Week 2 in the ICU – Update

Happy to no longer have a tube down his throat
Hi all,

Thank you for all the warm wishes and prayers for Idan. We are now on day 15 of living in the ICU (AKA International Space Station). We are still taking all precautions, and are in Isolation wearing masks, gloves and gowns. Idan has been improving every day from the pneumonia. Yesterday afternoon they took the breathing tube out (extubated) and he now only gets a small amount of oxygen in his nose. This was a very big step after being intubated for 13 days. They have also started weaning him the narcotics, which has caused him to have some withdrawal symptoms and he has the shakes and some other symptoms of withdrawal (think Matthew Perry as Chandler in season 9 of Friends when he was addicted to pain killers), but they are doing a good job here adjusting the doses to help him deal. It was just another scary sleepless night during Amanda’s shift since idan was all wired and could not sleep.  On the plus side, since he no longer has the breathing tube, Amanda was able to climb into bed with Idan and hold him for the first time in 14 days (cue waterworks).

He is still getting feeding through his nose tube and still has a bunch of other IV’s. But there is a plan in the next 24-48 hours to get him to eat on his own with a bottle, and to maybe get some of the main IV lines out. 

Overall his spirits have much improved since being extubated (see pics from this morning below) and he is more playful. We are still waiting on many tests to determine the type and severity of his immunodeficiency.  As of now, we have mostly ruled out SCID, but there is a long list of other possibilities.  The best part about Idan being extubated for all three of us is that after 13 days we finally got to hold him again 🙂

I will update more with better news as things move along.  Please feel free to share this news with others that have been keeping tabs on Idan.

Thanks,

Akiva, Amanda & Idan

 

Email Update 1 – Day 4 of ICU

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Hey,

I know you love to get updates about crazy things going on in my life, and after what I pulled off 7 years ago, you probably assumes you heard that last of it. Sadly, this time it is Idan. Last Wednesday, we had to rush him to the ER because he was having a lot of trouble breathing on his own. Right from a doctor’s visit they took us in the ambulance to NYP Cornell. He had been sick for a couple of weeks, and breathing faster and faster. They assumed it was just a virus, but he was not getting enough oxygen on his ond his x-rays showed a lot of fluid in his lungs. In the ICU they stabilized his condition, but he is intubated and on breathing machines. That is when the episode of House began. Trying to figure out the cause of his lower respiratory infection has been tricky. At first, he tested positive only to the RihonoVirus (AKA Cold) but that was then ruled out. They took a lunch fluid sample. and were thinking they would find a rare lung disease that is causing blood in his lungs. But that was not the case. Instead they found Pneumocystis pneumonia which is usually only affects kids with an immunodeficiency disorder. So that is now what we are trying to figure out, what kind of rare immunodeficiency disorder he might have. The good news, is that they can treat his current Pneumocystis pneumonia with Antibiotics and steroids that they started last night. It will probably be at least 10 days of this treatment for his lungs for fully clear. Then the long -term battle will start once they are able to diagnose is immunodeficiency disorder, which may take some time.

Amanda and i have been living in the ICU since Wednesday, and it has been a challenging time. But are surrounded by close family who are making sure we get food and rest. Idanlooks comfortable on the machines and they keeps him sedated and asleep while they treat him. We hope his lungs start clearing soon, and they can extubate him and wake him up in a couple of days. It looks like we will be at Cornell for another 2 weeks at least. But there is really no way of knowing. Once we are out of the ICU and in a normal ward I think it will be easier for visitors to come, but for now we are limiting visitors to close family. If you plan to call, better to email first as I have my phone on loud for family, but don’t want to disturb Idan.

Thank you all for your thoughts and prayers.

 

Update Day 3 of the ICU – PCP

Turn for the worst

Sat: 11AM

Hi all.

Going to give an update on how things are going in past 24 hours.

On Friday afternoon the doctors advised and we agreed that the best things to do is to run a Bronchoscopy to get a sample of the fluid in his lungs to reach a better diagnosis. To do this, Idan had to be Intubated. The test went well and so did the Intubation. So like his father before him he is now totally out and on a respirator and breathing tube. He is going to stay like this for a few days until they feel he is getting better and he can breath on his own again. Also, as we wait for all the labs to come back to know a better diagnosis, they are doing their best to keep him sedated. Right now they are trying to get a feeding tube down his nose so they can start giving him food into his colon.

As far as treatments: We are still waiting for diagnosis. If they do find red blood cells in the sample they took on Friday, it will probably indicate that he has some bleeding disorder in his lungs, and that might have been the cause (along with the cold virus that might have triggered it). They will then treat with Steroids and hope that it solves the problem in short run, with follow up visits with the Pulmonologist after we get out.

They did also find a bacteria in his lungs, which should not have been there. So last night they started him on antibiotics as well. They are doing many more labs on the samples they took and they are going to know more in the next couple of days, we hope.

As of now, there is not much more we can do for him besides wait by his side and hope he starts getting better soon.

You can call me on my cell if you want to chat more and I can pick up when I am not talking to a doctor/nurse.

Thanks for all,

12:51PM

We just got another update and they feel like that found a diagnosis. It seams that based on the test yesterday where they took a sample of the fluid in his lungs, he has a very rare Pneumocystis pneumonia (PCP). This is not common in healthy babies, and usually only presents itself with babies with a immune deficiency. Since there is little to no chance that he has HIV (All mothers are tested when they go into labor in NY) and he has not had steroid treatments for cancer. it is a mystery that still needs to be solved. They are going to bring in the infectious disease team now to decide on the course of treatment. It looks like a combo of antibiotics and steroids work very well to get rid of the fungal infection. But they need to also figure out why he got this. Most of us have this fungus in our lungs, but our immune system keeps it in check. So more tests are going to be done in next few days to try to figure this out. Indeed a very crazy episode of House. They are trying hard to keep in sedated and comfortable while he is intubated. So that the treatment can work and get him better. And we will take this one step at a time.

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