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<div>As many of you know Juliana has been going to all different gastroenterology specialists for about 3.5 years now. I have taken her to specialists in Manhattan, Brooklyn and Staten Island. Juliana when she was about 1.5 years old Joe and I realized that she was becoming constipated and than all of the sudden having diarrhea and becoming very sick. Juliana started to get bleeding around her rectum as well as bloated belly, fevers and vomiting. We took Juliana initially to the hospital where they did some bloodwork during her stay and told us she had markers for Chrons Disease. The doctors in Staten Island University hospital told us do yourself a favor and take her somewhere off of Staten Island. I immediately looked online and found a Doctor in Morgan Stanley Children’s Hospital in Manhattan who according to most reviews was excellent Dr Neal Leylako.
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<div>I took Juliana to Morgan Stanley where she had an ultrasound Fecal testing, laboratory testing and more. I was confident that Juliana was in the right hands and we would have a definitive diagnosis. After many trips to Manhattan for testing and care under the specialist during this time March 2023 Juliana was still constipated, still bloated and still not well. Dr Leyleko said
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<div>to me Juliana’s tests were all normal and she is just withholding and that this was something she would grow out of. Dr. Leylako advised me to start giving her Miralax to soften her stools and get her to go more frequently and to clear her colon. As times passed Juliana was not improving,. Her previous pediatrician suggested that we give her enemas if we see that it’s been a certain amount of days where she hasn’t had a bowel movement but Joe and I did not agree with them. During this time Juliana had been in and out of the hospital from March 2023- December 2023 a total of 10 times.
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<div>Fast forward to Summer 2024 I started to become more and more upset that Juliana was still having trouble having bowel movements. I switched her pediatrician to Tribeca Pediatrics where we met Dr. Moore. I went in for her first visit sobbing with a folder full of Juliana’s previous history. She told me to take Juliana to see another Gastro doctor on Staten Island Dr. Xu. I was hesitant since Juliana had already seen an entire team of gastrointestinal doctors at SIU North and at Morgan Stanley Children’s hospital. I reluctantly made the appointment to see Dr. Xu I printed all of her medical records again and we arrived to the appointment Juliana was sitting on my lap and Dr Xu began laughing. I immediately said is there something wrong? Dr Xu looked me in my eyes without looking at Juliana’s History or examining Juliana and said “ Look at your child.. She’s a healthy little girl. Nothing is wrong with this child she does not have any diseases that would cause her to have issues with her bowel.” I expressed my concerns to Dr Xu and explained that now at this point it seems like Juliana is unaware that she’s needs to use the bathroom. He laughed and said this is called Toddler Diarrhea she is not ill she is just holding it in to the point where she’s becoming constipated. I looked at this doctor with tears in my eyes said “OK” and just thought to myself is it me?
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<div>I called her pediatrician and told her how awful my experience was in which she apologized we then came up with another solution snd Dr.Moore said let’s do diet change and eliminate Dairy to see if that will help. Long story short we did one Month August no dairy It did not help Juliana was still struggling. Dr. Moore sent Juliana for allergy testing because she had noticed the specialists failed to do so but unfortunately it came back that Juliana had no allergies or Celiac disease. November 21 2024 Juliana was screaming that she felt like she was going to throw up, she was shaking and her stomach was so hard and distended. Joe called me at work and said she needs to go to the hospital so I left my office and we took her to the hospital where we saw the pediatrician on staff that day and he came to us and said She is so backed up with stool that it’s putting pressure on her pelvis. I was crying and I told this doctor her history of doctors I’ve seen and all the testing she has already been put through. The doctor said I know you have seen everyone but if this was my child I would take her to see Dr Daniel she is incredible. He called Dr Daniel’s for us in the hospital to give her a little insight of what had been going on. They discharged Juliana and told us that staff from Dr Daniel’s office would call us. We ultimately made the appointment December 11th was the only day Dr Daniel’s could see Juliana so we accepted the date and waited patiently.
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<div>What seemed like an eternity till December 11th it was finally the day to take Juliana to see Dr Daniel’s. Again I printed all of her history from every testing and specialist she saw and was sitting patiently to meet with Dr Daniels. We got into the exam room and Dr Daniels came right in after us i immediately started hysterical crying. Dr Daniels said to me I completely understand your frustration. She examined Juliana and we had a discussion about possibly of what Juliana has being something rare. Dr Daniels ordered Juliana to go for a Barium Enema series to check her colon. Dr Daniels said I don’t want to scare you but it’s a possibility that Juliana has something called Hirschsprung's Disease. She explained to me what it was and she said we will take it one step at a time let’s see how the test goes and if after the test if something is wrong I will immediately call you. I left the office with hopes that finally a doctor who is doing different testing and who could be onto something but at the same time I wanted to throw up with the thought of the diagnosis. I immediately called Verrazano imaging and the only appointment was 12/26. I knew it was going to be torture waiting two weeks for the day but there was no other center who did this test on children.
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<div>December 26th came faster than anticipated It was the big day I got Juliana ready and explained to her that the doctors had to look in her belly. Joe took her to SIU North for the test and I went to work and patiently panicked. Joe texted me about 2 hours later and said The doctor who performed the test said “This does not look good. It’s definitely looking like Hirschsprung's you can see the area of the colon that’s not working.” I was at this point sobbing. About 20 minutes went by and Dr Daniels called me and said based off the imagining Juliana could in fact have Hirschsprung's based on the barium enema images she will need to have a suction biopsy confirm. Dr Daniels said unfortunately this is all something that a pediatric surgeon would need to do and the only one who preforms the surgery is at Cohens Children Hospital in Long Island. She gave me all the info and I called to get Juliana’s appointment made. Initially upon calling the office of the surgeon they told me 1/8 would be the next available. I made the appointment in Hope that I would call them at the end of the week to check for cancellations. 12/27 9:00 am the surgeons office called and said that the doctor saw Juliana’s images and would like you to be seen sooner. The staff gave us an appointment on 12/31.
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<div>Unfortunately we changed health insurance once Joe got into the Union in 2023 which caused us now to have extremely high co-pays and medical bills. We are anticipating the road ahead of us to be rough. Many of you know Joe works overnights and is not back home until 4:00 am. We are anticipating that I will stay home with Juliana for an extended period of time once she has surgery. We would have NEVER have even considered resulting to creating this but we are going to have a long road ahead of us. Juliana’s hospital stays what we will be responsible for from October 2024 till now are currently $2126.
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<div>Any donations made will solely be used for Juliana’s medical bills and expenses. For follow ups and for our expenses while I am out of work to care for her. Without my income for an extended period of time will harm us tremendously. Any money that is remaining after her care I will be donating to REACH. Research, Education &amp; Advocacy for Children with Hirschsprung’s Disease and RARE kids network.
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<div>Any parent who ever thinks their child has a medical condition or problem please never ever give up just because a medical professional discourages you. You know your child and you have to fight for them.
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<div>ADVOCATE FOR YOUR CHILDREN ALWAYS! Doctors are not always right.
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<div>Thank you.
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<div>The Passarelli Family
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Mark Simeone

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Help Juliana Continue to Fight ❤️

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