Joseph DeNicola Allergy Journey #Anaphylaxis #1moment4Joe

Joseph had allergies since he was an infant in 2007. Born March 18, 2007, he had been named after St. Joseph.  As I had worked in tower 1 of WTC on the 13th floor a prayer I read at my desk each day.  I promised the heavens, if I ever had another child I would name him Joseph.  It was my first miracle child Anthony, who started his first day of pre k at Holy Child on 9/11.

Since I was high-risk pregnancy, I was placed on weekly progesterone oil shots, with hopes he would not be as premature as my first who was delivered naturally, at only 27 weeks.  One thing after the other took place for Joseph, that his immune system had been overloaded since he was born. 24 hours of timely labor and progress, to receiving for the first time an epidural and everything stopped on March 17 St. Patty’s day, they rushed me in for an emergency c section.  I had a high fever those few days and could not breastfeed, so they had placed him on a basic formula in the hospital.  I attempted after such when we got home the same as I did for my first to breastfeed since the benefits are so great, but we had been both having difficulties.  He was having such digestive issues, the pediatrician sent us to a specialist to examine him for digestive issues, and placed us on formula, a soy based.  Within the first two months, all of this took place as well, him having to have surgery due to a hernia developed. A heart murmur that had to be monitored. My child was already at more doctors in a week then I could keep up with diaper changes it felt. Something made me never leave his side, taking a cot and sleeping in his room next to his crib for many months, just to listen to him.  A call from his pediatrician that he had received a possible contaminated vaccine, at the hospital, to have to get an additional vaccine, it was very scary, to not know, what that exactly meant, but I do know that he had to receive an additional after the first but his doctor told me to not be alarmed.  We keep the faith, but as we all know after they develop low-grade fevers etc. and we watch them extra careful, so this took me some time to feel okay that it would be fine even after the doctor’s assurances.  So many questions, just how much could my child take. Especially having to have been under for his surgery.  When will he have a moment to heal.  As early as 6 months when we attempted to introduce more to his diet, they had been milder (rash, redness etc.),  We had been advised by his pediatrician to give Benadryl those few times, but testing was not ordered. He had his first Anaphylaxis reaction at 12 months old when we attempted to cut some whole milk into his soy-based formula unknowing he had been allergic to such.  Testing then was ordered and instructed for us to see an allergist.  I made sure he has seen the best and had every available resource out there available to him, including fighting to get him a school, Para.  He never did without, I made sure of it, his own cupcakes, everything that he had was his so he did not feel left out.  Not that he was a complainer because he was not at all, never not one time thinking back ever did he complain about his allergies. He was the most compassionate child I do believe because of them.  Everything we cherished, just a blessed love for life.  My heart holds my son each day, and I keep going based on how he taught me to love.

His spirit is to be felt it was so wise beyond his years, so funny, so alive.  I was just always amazed by him, if only he had been born a couple of years earlier I would tell him with the ideas he had not knowing that they existed, other things he was a creator, he came up with, I still hear him saying to me “It’s a good idea, right” Everyone was happy around Joe and if they had not been, he made them.  He was just a breath of something I cannot find anymore in this world, I am not just saying that as his mom… If you talk to anyone that knew Joe, they will tell you, how he brightened up people.  A teacher told me, she would feel tired and down and out and then here would be Joseph skipping along and that smile and interaction just filled her beyond.  Teachers, parents, friends, so many people came up to tell me the most magical stories of Joseph at his services, he was only 7.   Just the way he looked at life, the pureness, innocence the desire to love everything.. the big heart that did not understand how others could be mean, or harmful would be the only frustration or complaint to me.  My Joseph…   So many signs during each step, little miracles, gifts I noticed.  Ways that I cannot explain, that I just felt.  So many people did so much for him, to getting us the best of doctors, helping in ways that are too many to even list.  Religious people coming to pray from all different groups, leaders.  Every prayer and type, it was beautiful. Even his school to naming a garden in the schoolyard and renaming the street of the school after him, and dedicating that they all walk under it in the annual Halloween Parade, the last thing he did on that day that he was just so filled with love and happiness.  His school was his safe haven, he loved it..  They had always been good to Joseph.

 

We lost Joseph on Halloween 2014. He enjoyed his day in school with the most wonderful Halloween parade, this the picture on that day.  So much happiness I see on his face. His last spelling test his teacher provided to us, and the last word he had to spell ” Mother” 11234866_1000305743347023_4644918709509265795_n Featured Image -- 3990

 

 

 

 

 

The date of my sons death is November 4 the day they wrote on a paper that they believed he was brain dead, but I know when his heart stopped and I know when my son’s Angels came to get him, so for me, it is not just one date but as things slowly took place he held on each step along the way.  We had been in process of divorce and I had not been with him the days leading up to his last reaction.  As many share parenting time, time away is an anxiety to most parents.  We hold faith all is well.  Divorce and food allergies, a mothers nightmare. So the following was the events that had taken place, by all that had been part of that day.  I thank all of you for I know you all did the best that you could with what had been a very fast turn of events, with what was available and aware.  I thank you all. Miracle workers the doctors, nurses, support from friends and family. I learned of the event by a twitter post of my older son posted.  “Joseph I don’t believe what they are saying, you are going to make it”.  No one had made any attempt to contact my family or me.  The feeling within me, I just knew something was wrong, fear came over me, and pain, something I cannot explain in words.  Within a few moments, I was already on the phone with everyone including my ex and the doctors.  My family already there, since I called my sister to get there right after I talked with my ex. I arrived that next morning, traveling non-stop to get there since I had been in Wisconsin two hour flight, felt so long.  By the time I ran into the room, the doctors all held me, to explain everything, since I did not really know the extent of the findings that he suffered until I walked in that door. I felt like I was walking through a wave of them physically holding me, all I wanted to do is get to my child which I did.  after I held him and kissed him  Back to them.  Already to much brain damage due to lack oxygen. His eyes had still been dilating, so brain function still working, I just did not move from his side. I attempted my best to explain heaven and angels and everything that I feel it would be, and asked the angels all to come and get him to bring him to his kingdom.  How do you prepare to have this knowledge to telling your 7-year-old child? I am still there, day 1.  I have not left those days yet. I am sure I will be forever.  Those days, I cannot express in words. Those that came during those days, and helped to bring support to all of us I thank you all.  I am forever grateful.  The thousands within the food allergy community that supported us, so many of you.  On November 4th the final testing took place and they determined and called his death.  I was on my knees begging for another test..yes, on my knees talking to the doctor, just so many of you brought in the best doctors, to telling me everyone did all they could have.  The blessings and love, you all wished and asked for when it was time for me to get into bed  to hold him as they were going to turn off the machines, the organ donors walked into the room and as a family we decided, it was up to Joseph and it was his way, to helping always everyone.  To know my son, you just felt heaven on earth, the spirit to helping and so very kind.  So smart, beyond his years, I always said to myself there is not another person on this earth like my son Joseph.  There is not, such beauty he was inside and out.  A rainbow of the most beauty.. His love we will continue to help the next, to learn how, time is so important to knowing the signs, acting fast and just attempting to raise his story so another can see what might have taken place to help the next.  His lesson, never delay, give epi right away and first.

These are the events that took place.  The allergen was not due to inhalation, as some news organizations reported incorrectly, a lot of miss information by media is out there.  As many angels parents have expressed to me and I agree, most media coverage is not detailed enough, and we do express a common dislike to most of the coverage. When reading any such, look to Allergy advocate news organizations, that can give more credible details, just from an awareness standpoint based on experience. The following by medical records, doctors, and facts.  I do hope it helps the next to raise awareness.  

 

Joseph Last Doctor exam0003

page 2 of doctor report is at the bottom of this page.  

 

Take out ordered, Pizza party, kids, and allergen contact. Period. 

  1. Joseph had been Trick O Treating and went to a family party with his father, which had ordered pizza for everyone, oil from the cheese had always been a fear of mine so when the pizza arrived, I was normally out the door with Joseph.  He had reactions to such a few times before. I was not with Joseph on that day.  His father explained that a “special” pizza was made for Joseph from the same pizza place.  My son was severely allergic, called “Anaphylaxis” and “contact urticaria” since the age of 4, ( again, read the medical letter above or below) contact urticaria, is just a slight amount due to cross-contamination either by mishandling or having a small amount e.g. “of oil” anywhere, on anything he touched that had his allergen, such as a place that the contaminated pizza had been eaten, or placed…was all it took.  Just as someone might go into anaphylaxis due to latex. What we know is he was in a place surrounded by his allergen being eaten by others and served. Especially other children.  Made at an outside pizza place, even his own on Halloween, yes a very busy time in Staten Island NY.  It was not inhalation, it was cross-contact. A small amount is all that was needed.  Joseph did not have asthma.  ( see medical letters)  I stayed away from media, was not my focus. I was ONLY focusing on Joe during that time. Nothing could take me away from his side.  I will always say that his father “did the best HE was AWARE to do”. As many of you know, the ONLY outward communication I made and I felt important during that time, was with the hearts of the FA community knowing what you all had been wondering took place.  You all have and had been with me and Joseph since 2007 so on the day before his burial on the 9th I reached out to you all since I knew how events hit hard and facts are needed. Thousands of you reached out to me.  I still read the wonderful letters, cards, and prayers.  Warms my heart. kkhkhjhjkh.PNG I thank all of you for organizing #teal4Joe at that time for my son. So many of you, my FA family, I will do everything I can always for all of you.  I love you all so much.
  2. Joseph did not have asthma. He had a heart murmur and severe allergies. ( see below medical letters at the end).  Again, during the years, at times that Joseph had anaphylaxis reactions, we would be prescribed to use albuterol after reactions to help in recovery and steroids.  A nebulizer was used during those times, we had noticed after each reaction, it would take a longer period to manage his healing.   As everyone who suffers such is.  He had been seen in the hospital a few months prior to his death, due to an acute Anaphylaxis reaction, why such available.
  3. At the time of signs of having trouble breathing he was told to relax since he had been running around with the other kids. Unknown how long it took for them to decided to take him home from the families house, but before they left the families house, I had been told by family members Joseph was stopped to be given Benadryl. As I told those family members in the hospital, I will say it again, “NO, Joseph has Anaphylaxis and Benadryl does not work for such. EVER. ONLY EPI RIGHT AWAY.”
  4. When they arrived home, (a few minutes away by car, but by walking around a 10-minute walk) He was placed on his nebulizer to receive such treatment first, prior to immediately receiving epi, long enough to have a conversation that he will have to receive such, and Joseph telling his father, he did not want such.  The anxiety of my son, having such in the past, breaks my heart.  Again, his father did the best he was aware.  Since such was not working after some time, his father then administered the first Epi-pen.  Within a few moments Joseph was unconscious and then he gave him a second.  Carrying Joseph outside to getting him help, as per a next door neighbor who held Joseph as his father drove to the hospital 3.9 miles away from Staten Island University Hospital on Seguine Ave, knowing my ex, he made it there in half the time.  lkjlkjlkjlkjlkj
  5. 911 was not called.
  6. By the time, Joseph was received at the hospital he had already been in cardiac arrest based on medical records.  They did the best they could to stabilize him, but they had to transfer him to the hospital’s north campus 7.9 miles away.

This was not his first Anaphylaxis reaction, it was his last. Again, he had reactions before, his level was so severe COMPLETE avoidance was required to keeping him alive.  I had always given epi right away and called 911.  I cannot tell you how many times I think back to one time when a fireman stood next to me telling me “Mom you just saved your child’s life”, that I was just doing without thinking, knowing how minutes matter with anaphylaxis.  I did not care to those who called me overreacting, or overprotective.. they lacked awareness to factual understanding.  I actually was doing what was right, Joseph had Anaphylaxis and there was never a mild reaction after his first sensitization to such. I felt like my face would be blue how many times I tell people to act with his epi right away, over and over.  So many times, it just had to be told, I did not care.  I did not go ever without his epi on him, medical bracelet and armed with as much awareness I could learn.. to teaching him, as best as we can without bringing such fear or leaving him out of anything, he always had his own and if not better cupcakes then the next.. lol… rainbow cupcakes had been my specialty, many years ago..

I would always think about the stages of his life and how I would have to prepare both of us.. He was stronger than me, he had to live it but how beautiful his soul and spirit he just snapped me out of sadness into happy all the time. Oh God, how much he taught me.   

We are all guilty of the “not my kid syndrome”.  So much I knew how severe the risks where but never did or would I imagine, my Joseph. I cannot tell you how many times I rewind everything in my head, but it always comes back to waking to the same but knowing that what we have been through, can help the next.  We pray and do all we can to keeping them safe the best way we can with what we have available.  I will be his voice always, and I will keep to helping the next in any way I can to keeping his heart and love going.. 

I hope the following information helps you all to understand the Risks even when we do not want to see them or understand them, yes the “Not my child syndrome” but part of my awareness I am bringing is, yes …. you should take the time to raise your awareness since we are all at risk.

  • Know the signs of Anaphylaxis
  • Be prepared with life-saving auto-injection, THE ONLY drug that can give time to getting to IMMEDIATE medical attention, MINUTES MATTER… NEVER DELAY! When in doubt give it~ It is the difference between life and death! CARRY TWO !!!!
  • CALL 911 get to the hospital because a lot is going on, inside !!!!  Understand Epi is not a ‘cure” and does not guarantee anything other than time to get to proper medical attention, receiving such is not the only treatment, it is the start to give you TIME, to get you to the hospital.  If given in time, upon onset reaction.  Never wait, just give it if you know a history of anaphylaxis and to anyone that shows the signs of anaphylaxis without history.   Please watch the next videos to understanding more.. Please arm yourselves with as much knowledge as possible it is the first step to saving a life….
  • #BeAware #BePrepared #ActFast

What is happening inside matters?  Here is a video explaining Anaphylactic shock.

Asthma or Anaphylaxis

Time was the difference, auto-injectors work for severe asthma too.  So please be prepared and act fast.  Know the signs of severe reactions.  You can learn more at AAFA.org

http://www.aafa.org/page/anaphylaxis-severe-allergic-reaction.aspx  

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ALWAYS CALL 911.  An ambulance can start further medical treatment and monitoring until you reach the hospital. Remember getting auto-injector is the ONLY first line to saving lives, and it gives time until you are treated in the hospital.  Vitals need to be monitored, reactions can resurface hours after.

Everyone should be aware them!  Anaphylaxis can happen at any age and at any time.  There is not a routine test that can tell if someone is at risk, before any signs.  Many assume that people are tested for this, without any signs. They are not.  The first reaction is the first step, and the matter of knowing the signs, are so very important.

Here is a video that can best explain the testing

Treatment and Prevention of Anaphylaxis

 

Here are two videos, When to use epinephrine, and how to use Epi.  The ONLY life-saving medication is epinephrine

When to Use EpiPen

 

How to use Epi Pen

Our Milky Way Joseph DeNicola
March 18, 2007 – November 4, 2014
With all my love son, for you brighten up the Milky Way

Please feel free to share to help the next.

We celebrate two events each year to raise awareness.

Joseph birthday on March 18, 2007. We ask all to light a candle or just invite people to hear about Joseph or just a moment to wish him a blessing.

On Halloween, when he fought his last battle with anaphylaxis, we raise awareness each year around the world.  Each year we reach so many in areas, it is amazing.. to just stop for one moment at 4 PM Eastern Time in the USA to make sure everyone is prepared before they run out the doors.  It is very fun even, all the pictures of everyone in costumes, the teal pumpkins, it is a time of year that is just Joseph. Always had been.
20170810_222628Joseph born a with a dark mark on his brow like a birthmark, I am told they call it angels kisses. I believe that.  I am sharing some information that you can all look at and I hope it helps, and some photos of our little man.  My angel … The love of my life.. My son Joseph…

 

 

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To know Joseph was to just feel heaven,  he brought sunshine.  His ways, always helpful and loving. Loved everyone,  animals,  plants fish.   Just love.  Anyone can tell you just by him smiling at you, his pure soul made you feel love, just happy.  He helped anyone in need, and he was just a child.  His laugh, contagious,  his sense of humor your stomach would hurt.   How he would come up with things that just amazed me beyond.  He made me see the world all over again through his pure eyes. My life. My older son said it the best.  He was a glimpse of heaven here on earth.  Blessed to be their mom both of them.

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Joseph Last Doctor exam0003Joseph Last Doctor exam000411070238_462425263911713_452189636503714100_n11070632_462422967245276_1355984449230445582_n

Took Joseph all the way to Boston since back in 2008 I read about a new type of milk allergy trial, ironically it is what they call OIT now.  So the doctor that had been performing the research, I was determined to make Josephs doctor no matter the cost.  I never took no for an appointment and kept calling.  Finally, an appointment set, and off we had gone! Bostons Children’s Hospital, I was told that Joseph was too young for the research program, but when he came to the age of 5, he would be the right age immunity reasons.  I was also given to a closer doctor Dr. Scott Sichierer Mt. Sinai NYC who would be his doctor recommended by the doctor from BCH to being closer to home. He is wonderful.

Boston , 2010 learning the different testing.  We made it into an adventure… FB_IMG_1502422606233You had to see my husbands face when I told them all to get in the car we are going to Boston. LOL. I will not forget those days.

All mothers know to get the best for our babies. Regardless. So after our wonderful weekend, we had made it, we knew exactly what Joseph was allergic to.   His levels of IgE for dairy proteins greater than 100!  Severe, not just a food allergy.  We learned what “anaphylaxis” was.  I cannot tell you how many times I have googled that word, as well spell checked it.  What the details of the research complete on Joseph was unreal.

The interviews and the doctors from Harvard spent so much time with us. Hours talking all of us including my son Anthony.

 

Here are two blessed letters from those who had been blessed with Joseph’s gifts of giving.

 

 

I thank you all!  I love you all!

Our Angel Joseph, our Milkyway guardian, will always protect all of you, see it was not the epinephrine auto-injector that did not work it was time, and the time it takes we do not have a chance to think just do. So JUST DO IT, NEVER WASTE TIME and ALWAYS have 2  epinephrine auto-injector with you.  Make sure it is NOT expired.  Just as you put shoes on your feet each day. Someone needs to invent this somehow…Auto release, of the drug people, can wear, like a pump, with GPS, and alarm emergency contacts!

It could of saved my son being so young and dependent on others.

He will forever protect you all… We love you

Forever

A Mother of An Angel
Joseph’s Mom
Julianne

Mom:”Joseph what is your favorite color?”

Joseph:”Da, Rainbow mommy.  I love all of them”

My children are my heart and soul. My life.  As a grieving mom, we still never stop worrying about our children.  Then signs he sends me all the time, a rainbow,  a Pokemon, a butterfly or a song he would sing Katy Perry Firework song.  Those signs bring back to me that pureness,  his spirit, and the tears turn into a smile.  Knowing somehow,  he still is with me always. Mothers intuition knows no distance…..for the bond is endless

Some videos of Joseph on my youtube I made. Hope you like them all. I will forever be his voice and support for all who face food allergies. You are my family and your children as if the same as mine. Always…

 

 

4 comments

  1. My darling, thank you so much for sharing your story with me on Twitter. My heart bleeds for you. My son Jack was disagnosed 8 years ago after developing anaphylaxis at a 40th Birthday party. Someone touched his face after eating peanuts. Thankfully he was treated promptly and survived although I had to fight to get him allergy tested. The tests showed a life threatening allergy to peanuts. My ex husband still refuses to accept the diagnosis so what happened to you fills me with horror. Last Thursday Jack was at an open evening at school and when I picked him up he said he felt funny. It became rapidly clear he was having a reaction and I rushed him to hospital where he got worse and worse until he stopped breathing. The doctors saved my son but it was a battle. We don’t know the trace got on him. I still have my son but I live in terror. I am determined to raise awareness of this issue and educate so lives can be saved. I am sending you my love and hugs and shared tears. I will be praying for you and Joseph and will support your memorial act. Bless you xx

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  2. Blessings to hear that he is okay. I am sure that your ex, by seeing the level of what almost happened to him, to understanding the risks. I am always here, please give your little warrior joseph’s protection poem card. I hope his story helps to bring life safer to the next. He is an angel with his story that can help to explain that, sometimes we need that help to making others understand the risks.. I am still his momma and I have told him to always watch over your little one.. lol… All I have each day is to express that we want to share him with others, to help them get to those that, just like your ex-need extra help… I have stories from children that had handed the card and say this is Joseph, tell whomever they needed to his story, and that they need protection.. Those teachers and adults, then get it.. Kiss and hug your little angel for me. It is so hard to say how much the legal systems need to become aware. I will never stop like you to help the next and again please always know you have Joseph helping.. I do believe that helps me each day to still get out of bed, to help one person or more than one.. share him with your ex.. I love you in my heart because I know what you are feeling beyond. I am always here for you.. and your little one.. ❤ Our love and light to you.. always…

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