Team Julia
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Team Julia
Hi, my name is Amerina Petrucci and I am starting this fundraiser for my cousin's daughter Julia Morreale and her family. My cousin Nadia and her husband Elio (and their 2 other children Anthony and Emily), have been dealing with a medical nightmare for the last 9 years. They are from Toronto, Canada and have been living at the Ronald Mcdonald House in New York city for the past year as they fight desperately to save their daughter Julia's life. As Julia's treatment is a clinical trial they were declined coverage from the Canadian Health care system. They have spent thousands and thousands of dollars on her care. I reach out to all of you in a desperate attempt to help them. Below is Julia's journey written by my cousin. Lets rally together and help this little girl, as every child deserves to grow up.
On Sept 8th,2005 we welcomed a beautiful healthy baby girl into our lives – Julia Alexia Morreale. We felt so blessed as we had what most people call "the million dollar family". But nobody could have prepared us for what was going to happen next. In February 2006 (at 5 months old) Julia had what seemed like a cold. She was admitted to hospital for dehydration and we were told we would be out the next day. After 4 days in hospital we saw our little girl get sicker and sicker. The next thing we knew we were being transported to ICU in Hamilton. Julia had developed a serious blood infection which had attacked her heart. Close to 2 weeks in ICU Julia made an amazing recovery and we were told to thank our lucky stars. Three weeks after being home we noticed that Julia was not herself. Within hrs we were rushed to ICU at Sick Kids hospital. After 13 hrs of doctors working on our little girl we were told that Julia’s heart had suffered irreparable damage. The doctors took us aside and told us that our daughter needed a heart transplant and that as a family we would need to make the decision to list her for a heart or say our goodbyes. Saying goodbye was not an option and she was listed that same day. 2 days later Julia's heart was barely working and doctors did not think Julia could survive waiting for a heart. They approached us about giving Julia a mechanical heart as she waited for a donor. At this point elio and I had not slept for days and were completely overwhelmed. We agreed and the surgery was planned for the next morning May 5th at 6am. That night as we listened to the doctors explaining what to expect with the mechanical heart I was approached by a nurse and told the transplant doctor was on the phone for me. I picked up the phone and will never forget the words I heard, as she said "nadia, I have just accepted a heart for Julia. Our team is on their way to get it and the transplant will happen within the next 12 hours.". I remember falling to the floor in tears. Tears of happiness, sadness, and complete fear. The following hours were intense as the team prep ed her for the OR. At 6am on May 5th, 2006 Julia went into the OR for the most precious gift ever....a new heart, a new chance at life. We felt immense gratefulness but also sadness for the family who had to make the tough decision to donate their baby's heart in order to save our little girl. We are forever grateful to our donor family.
The following months were challenging with many appointments, biopsies, medicines, and overall care. But with lots of support from our family, friends, and doctors we got through it.
Julia's post transplant care was complicated by many episodes of rejection and many infections. By the end of 2008 we noticed that there was something wrong. A few months later we heard the words no parent ever wants to hear. Julia had cancer. Post Transplant Lymphoma Disease (a rare form of cancer associated with transplant). That day we were transferred to the Oncology ward and were started on low dose chemo which lasted 3 months. Julia responded well and went into full remission. But 4 months later Julia had relapsed and the cancer was everywhere. The same day we were told of the relapse Julia started very high dose inpatient chemotherapy which kept us in hospital for the full 6 month treatment. Poor Anthony and Emily were forced to spend 6 months barely seeing me as all my attention needed to be with Julia as she fought for her life. We felt completely helpless as she lost all her hair, lost so much weight, spend most days so sick, and even ended up back in ICU. At the end of the 6 month treatment we got the terrific news that Julia was once again in remission. Just before Julia's 1 year anniversary in remission it was confirmed that Julia had relapsed again. More treatment and 2 more relapses followed. In late 2011 Julia relapsed for the 5th time. We were told that there was nothing new Sick Kids could offer us. However our oncologist had found a clinical trial Memorial SLoan Kettering in NYC that was using cell therapy (something we do not do here in Canada). The trial came at a high cost and despite getting declined by OHIP for coverage Elio and I knew we had to do whatever it took to save Julia. So off we went to NYC to begin treatments. New place, new hospital, new treatment, new doctors, and no family with us made things extremely overwhelming. We made regular (sometimes weekly) trips back and forth. Last June Sloan Kettering advised us that we need to stay here as they treated Julia more aggressively. So since last June we have lived at the Ronald McDonald House in NYC. As Elio, Julia and I have been in NYC Anthony and Emily have been back in Toronto with my parents. The seperation has been hard on all of us. Julia had been well an cells were keeing her stable until 3 weeks ago we learned that Julia has new disease in her lungs. We are making one last attempt with cells as Sloan was able to grow Julia's own cells. She has now received 3 weekly infusions of own cells and now we wait for scans 1st wk of July to see if the cancer is gone. If not, we will need to resort to a new chemo/antibody drug that is not used in Canada on kids. This drug will come with high costs and we have already streched ourselves financialy with Julia's medical expenses.
Julia has had 4 central lines, thousands of pokes, hundreds of tests, and more than 3 dozen trips to the OR. She has spent more time in hospital than out. Most of us will not endure in our lifetime what our little girl has endured in her short life. Julia's fiestiness, stubbornness, bravery, courage, will to survive, and fight is inspirational. And as our journey continues we and especially Julia will continue to fight.
Most times we feel helpless, terrified, sad, and angry. But we try and remain grateful for all Julia has overcome, we remain positive, and we continue to believe in the power of prayer. We have been asked many times how we cope and I don’t really have an answer. There are a lot of tears and sadness but somehow we just do what we have to do and have learned to take it one day at a time.
To say the last 9 years have been crazy would be an understatement, with many hospital appointments, procedures, treatments, and being away from home and our other 2 children.
The money raised will help with Julia’s medical bills and living expenses while in NYC. It will help with treatment costs, food, and accommodations while.
Of course there is no way to truly convey how you feel as a parent when you find out this is your reality. Julia is our champ, our rock, our inspiration, our hero
We will believe…..we will fight…..we will be strong…..and together we will conquer cancer.
Thank You
Hi, my name is Amerina Petrucci and I am starting this fundraiser for my cousin's daughter Julia Morreale and her family. My cousin Nadia and her husband Elio (and their 2 other children Anthony and Emily), have been dealing with a medical nightmare for the last 9 years. They are from Toronto, Canada and have been living at the Ronald Mcdonald House in New York city for the past year as they fight desperately to save their daughter Julia's life. As Julia's treatment is a clinical trial they were declined coverage from the Canadian Health care system. They have spent thousands and thousands of dollars on her care. I reach out to all of you in a desperate attempt to help them. Below is Julia's journey written by my cousin. Lets rally together and help this little girl, as every child deserves to grow up.
On Sept 8th,2005 we welcomed a beautiful healthy baby girl into our lives – Julia Alexia Morreale. We felt so blessed as we had what most people call "the million dollar family". But nobody could have prepared us for what was going to happen next. In February 2006 (at 5 months old) Julia had what seemed like a cold. She was admitted to hospital for dehydration and we were told we would be out the next day. After 4 days in hospital we saw our little girl get sicker and sicker. The next thing we knew we were being transported to ICU in Hamilton. Julia had developed a serious blood infection which had attacked her heart. Close to 2 weeks in ICU Julia made an amazing recovery and we were told to thank our lucky stars. Three weeks after being home we noticed that Julia was not herself. Within hrs we were rushed to ICU at Sick Kids hospital. After 13 hrs of doctors working on our little girl we were told that Julia’s heart had suffered irreparable damage. The doctors took us aside and told us that our daughter needed a heart transplant and that as a family we would need to make the decision to list her for a heart or say our goodbyes. Saying goodbye was not an option and she was listed that same day. 2 days later Julia's heart was barely working and doctors did not think Julia could survive waiting for a heart. They approached us about giving Julia a mechanical heart as she waited for a donor. At this point elio and I had not slept for days and were completely overwhelmed. We agreed and the surgery was planned for the next morning May 5th at 6am. That night as we listened to the doctors explaining what to expect with the mechanical heart I was approached by a nurse and told the transplant doctor was on the phone for me. I picked up the phone and will never forget the words I heard, as she said "nadia, I have just accepted a heart for Julia. Our team is on their way to get it and the transplant will happen within the next 12 hours.". I remember falling to the floor in tears. Tears of happiness, sadness, and complete fear. The following hours were intense as the team prep ed her for the OR. At 6am on May 5th, 2006 Julia went into the OR for the most precious gift ever....a new heart, a new chance at life. We felt immense gratefulness but also sadness for the family who had to make the tough decision to donate their baby's heart in order to save our little girl. We are forever grateful to our donor family.
The following months were challenging with many appointments, biopsies, medicines, and overall care. But with lots of support from our family, friends, and doctors we got through it.
Julia's post transplant care was complicated by many episodes of rejection and many infections. By the end of 2008 we noticed that there was something wrong. A few months later we heard the words no parent ever wants to hear. Julia had cancer. Post Transplant Lymphoma Disease (a rare form of cancer associated with transplant). That day we were transferred to the Oncology ward and were started on low dose chemo which lasted 3 months. Julia responded well and went into full remission. But 4 months later Julia had relapsed and the cancer was everywhere. The same day we were told of the relapse Julia started very high dose inpatient chemotherapy which kept us in hospital for the full 6 month treatment. Poor Anthony and Emily were forced to spend 6 months barely seeing me as all my attention needed to be with Julia as she fought for her life. We felt completely helpless as she lost all her hair, lost so much weight, spend most days so sick, and even ended up back in ICU. At the end of the 6 month treatment we got the terrific news that Julia was once again in remission. Just before Julia's 1 year anniversary in remission it was confirmed that Julia had relapsed again. More treatment and 2 more relapses followed. In late 2011 Julia relapsed for the 5th time. We were told that there was nothing new Sick Kids could offer us. However our oncologist had found a clinical trial Memorial SLoan Kettering in NYC that was using cell therapy (something we do not do here in Canada). The trial came at a high cost and despite getting declined by OHIP for coverage Elio and I knew we had to do whatever it took to save Julia. So off we went to NYC to begin treatments. New place, new hospital, new treatment, new doctors, and no family with us made things extremely overwhelming. We made regular (sometimes weekly) trips back and forth. Last June Sloan Kettering advised us that we need to stay here as they treated Julia more aggressively. So since last June we have lived at the Ronald McDonald House in NYC. As Elio, Julia and I have been in NYC Anthony and Emily have been back in Toronto with my parents. The seperation has been hard on all of us. Julia had been well an cells were keeing her stable until 3 weeks ago we learned that Julia has new disease in her lungs. We are making one last attempt with cells as Sloan was able to grow Julia's own cells. She has now received 3 weekly infusions of own cells and now we wait for scans 1st wk of July to see if the cancer is gone. If not, we will need to resort to a new chemo/antibody drug that is not used in Canada on kids. This drug will come with high costs and we have already streched ourselves financialy with Julia's medical expenses.
Julia has had 4 central lines, thousands of pokes, hundreds of tests, and more than 3 dozen trips to the OR. She has spent more time in hospital than out. Most of us will not endure in our lifetime what our little girl has endured in her short life. Julia's fiestiness, stubbornness, bravery, courage, will to survive, and fight is inspirational. And as our journey continues we and especially Julia will continue to fight.
Most times we feel helpless, terrified, sad, and angry. But we try and remain grateful for all Julia has overcome, we remain positive, and we continue to believe in the power of prayer. We have been asked many times how we cope and I don’t really have an answer. There are a lot of tears and sadness but somehow we just do what we have to do and have learned to take it one day at a time.
To say the last 9 years have been crazy would be an understatement, with many hospital appointments, procedures, treatments, and being away from home and our other 2 children.
The money raised will help with Julia’s medical bills and living expenses while in NYC. It will help with treatment costs, food, and accommodations while.
Of course there is no way to truly convey how you feel as a parent when you find out this is your reality. Julia is our champ, our rock, our inspiration, our hero
We will believe…..we will fight…..we will be strong…..and together we will conquer cancer.
Thank You
Organizer and beneficiary
Amerina Porchetta Petrucci
Organizer
Clark, NJ
nadia morreale
Beneficiary
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