JOSEPH’S STORY

Joseph’s Allergy Story.

Joseph had allergies since he was an infant.  I believe he had his first Anaphylaxis reaction at 12 months old to dairy (greater than 100 IgE).  Between 6 months to a year milder (rash, etc.) then to severe we watched over time.

We lost Joseph in November 2014. This was not his first Anaphylaxis reaction. Again, he had many reactions before.  He always faced severe risks each time, after what I believed was his first Anaphylaxis reaction at 12 months old.  As he got older, with prior reactions, came after reactions signs of asthma. Many of you are aware, unfortunately, having dealt with reactions before, I as his mom always noticed the lungs getting weaker with each reaction. Joseph always followed after we left the ER with medication, and notice to do the nebulizer for recovery.  

Warriors, they are our little ones, aren’t they.  They spring back before we do, emotionally.  In those moments they bring a realization of a smile back to us, help us to get up after what we just witnessed them go through.

Receiving his auto-injector in time in those prior years saved his life, as his mother I watched him recover before me.  Many of you again, and sorry to say have all been there and know why auto-injectors are designed as they are, fast acting.

The last reaction, his father had placed him on his nebulizer first to treat his asthma, as it was not working, then his auto-injector. He did the best of what he knew in the moment for Joseph. Being in the process of divorce, I had not been with Joseph on that day. Time apart, was crippling as many of you can relate.

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.

Now the long more detailed events that I will attempt my hardest to explain.  When I am healthier myself, I will attempt to explain better.

His story is much more than I can explain in words.  It is to be felt more than told.  I hope this summary can help the next! How serious food allergies are, regardless of mild they can turn into severe.  First reactions can be at any time and at any age.  Get annual review by allergists, get your QUICK response epinephrine auto-injector each YEAR! I stress how life-saving drugs are so important and are to be readily available without delay! KNOW the sign of life-threatening allergic reaction (anaphylaxis) is a severe reaction to a particular allergen or allergic trigger. Common triggers can include but are not limited to food, biting or stinging insects, medications, and latex. Exercise-induced anaphylaxis is also possible, and sometimes anaphylaxis has no apparent cause at all (this is known as idiopathic anaphylaxis).  Everyone should be aware them!

I will say it again, and will not stop :

Be prepared, know the signs of Anaphylaxis, use the ONLY life-saving medication epinephrine first before ANY asthma medication.  Act Fast that window of time is within minutes! CALL 911! We love you all! 

I do apologize in advance for grammar and spelling. I am currently suffering and disabled,  but not giving up! Severe depression,  PTSD, anxiety and complicated grief.  I refuse to be defined by them, but the reality in my daily abilities have suffered from memory,  mobility and function are very hard now.  I will never give up.  I am giving a long story, to attempt to help anyone doing research.  I was not with Joseph on that day, due to divorce. On the day of his burial was to be our time together again but his last reaction took place before such.  Divorce and allergies I will always be a voice, it must be the highest priority and at this time in many cases overlooked.  I give factual details, based on doctors and medical records.  Joseph last allergy testing was not completed the year I was not with him, even when request to the courts.  Always have annual testing. It is so important. New allergies, or allergies worsen.  We all as well hope to get to the point of food challenges to be free and clear.  Never miss your visits. Please.

Please visit and leave a blessing: Click here – In Loving Memory of Joseph DeNicola – Food Allergy Awareness.

It is bringing light in addition to the importance of time, and awareness that allergies do take lives. Learn from his story. We thank you all.

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 sharing to help the next.

I am Joseph DeNicola’s mom Julianne. Joseph blessed us on March 18, 2007. On St. Patty’s day Joseph decided, he wanted to join the celebration and decided to arrive a little early. I named Joseph after St. Joseph, for when I worked in 1 WTC 13th floor for years.  I look back on why events happened, and I thank the heavens for the miracles along the way.  In 1998, I was blessed with my first miracle my son Anthony DeNicola, Joseph’s older brother.  When the events, on Sept 11th took place, it was Anthony’s first day of Pre-school and had not gone into work that day.  At Holy Child preschool in Staten Island NY, I just found the pre- school the week prior, and the Thursday before remember as clear as day thanking the priest for making room for him, they had been already done with registration but I came back over and over to see if there had been any cancellations.  There had been, a call on that Thursday before.

On that day, after a scream towards the heavens as to why, then that calmness and state of shock, many in NY.   It was like the fast pace just slowed down, not knowing who we might have yet lost, or what else was to follow the pain and grief instantly rushed upon me.  As well a burst of thanks and a feeling of overwhelming uncertainty why I was still alive.  As I looked into my son’s eyes, a part of me resided to how many others would not be able.  I hold to heart each second and each emotion when I seen another person I normally commuted in to work with, or heard who made it out, but lost many blessed friends.

I recall I had gasped so loud beyond, watching the towers fall, without intentions of scaring him, but was grief struck, my friends like family, I worked with them some since 1990

I ran in to hold him and say everything was going to be okay holding back my tears, then I ran into the bathroom put on the shower to make noise that he would not hear me crying.  On my knees, I made a promise to the heavens.  I thought of that pray I would say each morning around this same time.  Then I said, if I had another baby I will name him after St. Joseph since it was a protection pray that I kept on my desk at work and said it in the morning as I turned on my computer to start the day.  That a pray I continue to hold dear.

Just about coming on 6 1/2 years later on March 18 2007, Joseph being the love that he is, decided since my family is both Irish and Italian that he will not be born on St Patrick’s day, 17th or St. Josephs day 19th but right in between. March 18 just a little past midnight. As everyone was enjoying corn beef in my delivery room, even the doctors I thought to myself, this is truly a celebration waiting for his arrival.

20170810_222628Joseph born a with dark mark between his brow like a birthmark, I was concerned and asked what this mark was, but it was just normal the doctors said. With time it will go away. I would sleep next to his crib each night, for something in me told me always to be by his side since the moment he was born.

I attempting breast-feeding as I did for my first miracle Anthony who was only 3.5 lbs born very early, to getting him the best for is immune system each day, I would go to the hospital to feed him, day and night. Until he was strong enough to come home. The first baby to leave the hospital at 4 lbs vigorous and healthy but little. My first little love.

Within the first few weeks of being pregnant with Joseph, we knew that I was high risk and they started me on progesterone shots weekly. I am not one to take medicines at all, but as we do, we do to making sure that our babies get the chances in life at all cost.

After Josephs birth, within the first week, I noticed that my breasts would not produce milk for him, oddly with Anthony, I was nonstop. Even had the best breast pump since I knew with Anthony, the ordeal.  I was so upset I recall asking the heavens why, why could I not produce to feed my new blessing.

Now I know, it would have harmed him. My body knew before me. When I was pregnant with Joseph I craved Milk all the time, see I forever had heart burn, thinking that I was going to have a monkey instead of my Angel at times. They say hair is the reason for such reflux feeling during pregnancy, I can differ to that as being a myth.

Within that time, we had started Joseph in the hospital on Similac every baby in the hospital was started on such. I noticed after his first immune shot in the hospital that his mark on his brow would get darker after he ate, but nothing else at that time.

When we got home, I noticed that he was not going to the bathroom correctly. I had been notified by our primary doctor that he had received a contaminated Hepatitis B (Recombinant) Vaccine]-Merck & Co., Inc.

First thing his immune had to fight was a bacteria same as food poisoning. The first thing my son’s immune system had to learn -defense. Not one doctor will ever admit it as a mother I do very much know for a fact ! CDC still has all the news avail, and I have all the doctors medical records.  They stated this was not part of the illness? We had been called in just to get another.  I am not one to wait or think what it could be. I go right to the doctor that is their job, not mine. I was sent to a specialist, for his stomach and they placed him on soy. Doctors did not ask to test for B. cereus infection after receiving the contaminated  vaccine, but we had all signs and had been sent to a specialist they assuming was sickness from the wrong formula… my baby pushed so hard with constant pain I would assume, but he was a fighter my Joe. Such a good baby, never complained.

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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 came 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 glimps of heaven here on earth.  Blessed to be their mom both of them.

For his first few weeks he ended up with a hernia only at 2 months old. Opened his diaper to finding the largest lump, my poor son.  So here we where now, my new little Soy boy I would call him. After a months time after entering this world, Joseph was going for surgery,for a hernia, I was told that sometimes the stomach walls do not close during child-birth.

I remember sitting outside the OR as they had to do the surgery, praying and praying. My baby already born, has to face, a lot I recall thinking. Well each day from there, a new with Joseph. Later to finding out, he had a slight heart murmur, and a carrier of talasima, which was from my husband’s side of the family, Italians more than most have it.  Luckily, have the Irish blood and Italian in me, the doctor said.  Just giving as much information to help the next.  Little things like that matter in research.

 

At around 6 months, it was time, as he needed more to fill him. We decided to start to feed him solid foods. Little by little

Pastina, a little bit of butter and milk, within a few seconds he began to get a redness all over his face, I was home during that time daily and not working, with Joseph. I had extended my maternity since of his illness and to tell you it was not a thought of even going back. I had to watch my little one beyond.

I called the doctor right away.  I was told to give him a little Benadryl, so I did, and the rash had gone away from his face.  When my husband came home that night,  after I explained this is more than just Benadryl that is needed.  I felt it in my heart, so new to it all, but the feeling of finding out more.  I start to research like crazy. Do you know how many times I had been told, just listen to the doctor?  I did not care what anyone thought, I kept to searching.  I was home watching this take place with him.  No, I keep on. Maybe it was to finding the right doctor.  It was.

It was now almost to his first years birthday, and we decided to start to cut his formula with whole milk, with the fist small amount I will never forget that night. As he was drinking, he began to turn blue, and he was having difficulty breathing. My husband and I did not know what to do, not a second wasted I called 911, and my husband thought it was asthma since we had been facing such with my older son Anthony.

Joseph had been sick during that week prior and had been put on an antibiotic, and they assumed when we arrived at the hospital that he was having an allergy attack from such.

So we still did not think it was Milk. We had gone home and after a month, still on Soy milk only, just something told me not to give him anything different.

I did notice whenever he was fitting a cold or virus, that he was more reactive.  Personally, I can tell you that when their immunity is fighting be ever more careful, especially if heading in for any testing a slight contact which would be mild, into severe. PERIOD. That from experience and factual.

We made an appointment to go to the doctor, thinking back now, wow what a chance we had been taking, but the doctor did not see an urgency. We had been sent to get allergy testing for Joseph. I remember sitting in the doctors thinking I have to understand this all beyond.

I had gone home and researched like crazy, everything I could find, and thanks to organizations so much available.  I have studied food allergies since 2007.  We laugh in the community that any top investigator has no measure in comparison to a food allergy parent. We need truth and facts, period.

In the beginning, my search was why my son was diagnosed, how to keep him safe. I will be a life member of the community, regardless. Now, his factual medical reason of loss.  I go by evidenced medical records and not assumptions.  Always to being his truthful voice.

A lot of misinformation by small local news reports are in circulation about my son.  It hurts not only his name but does not help the next that can learn from the mistakes Joe endured at his last reaction.  I know many parents that feel the same after their loss, not very impressed that alot had been left out.  I always tell people to read with that in mind. There is always more to a brief news article.  I do know during those earlier years, facts helped me understanding to keep my son safe and I went directly to well known medical sources.  Everyone has a different allergy, different immune different elements around them, so keep to knowing facts, basic very important facts and risks.

It was that first year, the education gathering and experience as I watched my son go from fine to being in the ER within minutes as many who live with allergies daily, know what is truth to hear say.

I was ready to go to the doctors with Joseph to get him tested and understood what we were going to expect. We have been interviewed regarding everything about his eating and events and when he had a few more breakouts.

Testing prior to him being 4 the doctor stated is to be subjective but yet to young for other testing we completed his first skin test on his arm at 2, dairy came up and we had been told to avoid by the local Staten island allergist. I cannot tell you how that birthday nearest to proper more detailed was like waiting to go on vacation, the days closer just seems longer. His own immunity needed time and I assumed vaccine schedule is over (@ that time) by 5 so when they told me there might be a chance of out growing such at 5 I assumed immunity age would be more mature and prayed as did all in the family.

Then we learned it was Casein, Whey, all Milk proteins and Hazelnuts. Finally, when he was old enough for testing age 4. So when he was 3 turning 4 2010 finally and my impatience mom that I am  I reached out to finding the best allergy doctors possible, and I decided as I am beyond limits of distance to get the whole family in the car, without warning after reading the best article about testing done on a boy with milk allergies at Boston children’s Hospital. milk desensitization trails in 2010.

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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 closer to home doctor . He is wonderful.

So off we were to Boston , back in 2010 learning the different testing. 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 that day. I had researched the doctor who was in charge of the testing and said that is going to be Josephs new doctor.

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.  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.

Anthony his older brother my older son, I had noticed was now very much protective of Joseph but paid very close attention to the doctors, and he took care of Joseph beyond. A child already facing the fears he was hearing of losing his brother if the worst was to happen, he was not allowing any chances. He followed Joseph like a Hawk.

Telling people sometimes before I could even open my mouth to speak, to tell them to wash their mouth before even kissing Joseph.

Well over the years I had studied allergies beyond. I did not care when people felt like I was over protective or demanding at times when it came to Joe.  I knew and I was very aware of allergies.   Having to educate everyone in his path, sometimes the closest people are the hardest.  I know the frustrations and those looks when you tell them, NO BENADRYL is not the answer when Joe had a reaction.  Even on the day walking out of my sons hospital room my ex family member asked why Benadryl was not enough, and my ex mother in law telling me ” well at least i had gotten some Benadryl in him before he rushed him home”.  How, i was just knumb at this point.  I just replied “it should have been his epi”.

Also, we all know as parents with milk allergy, many assume lactose, I cannot tell you how many times I had the conversation of how a slight amount can harm my son and take his life over the years. We pray they listen.  I had been to the extent that anyone that watched Joseph had to go thru CPR classes, too. Everyone knew what needed to be done and the signs. My sister would spend hours on hours cleaning her house from her kids, eating and playing with no chance to even a trace of milk in her house before Joseph came over to play with his cousins Frankie Louis and his Princess Angelina.

Well, I had gone into work that day of October 31, 2014, and came home, a holiday that I loved, as well my Joseph so very much. See Joseph was obsessed with Halloween and Pumpkins since he was a baby. Every thing was pumpkins and orange, and in each picture, you will see him regardless if it was Easter Joseph in a Halloween shirt of some kind. LOL. My Joe.

When I got home, I remember sitting down, and a feeling came over me, I did not like it. At all, but what do we do when that happens. Just wonder. I said I have to go downstairs and see what Joseph is dressed like this Halloween.

I ran downstairs since that feeling, and looked at my older sons Twitter page, and there as I looked, it saying “ I am not listening to what they say, Joseph, come back to me you need to be okay, I cannot go on with out you” , I called the only two hospitals in Staten Island that I now he would take Joseph and got my ex on the phone, he told me that they had been trick o treating and then went to his cousin house as we did each year. They ordered pizza, and he had a special pizza that Joseph would have that the place made special since they knew of his allergies. He said he started to have trouble breathing and he rushed him home to get his medicines, he put him on the breathing nebulizer thinking at first it was seasonal asthma and then seen it was more and grabbed the epinephrine auto-injector. Then he ran outside noticing nothing was working got our neighbor Todd and drove to the ER.”

By this time, and at that time at the hospital, Joseph had already suffered csv -heart attack, as many know relating to anaphylaxis deaths.  The miracle doctors brought him back, my sister had me on speaker talking to him until I could get there for him, she never left his side until I got there.  Longest 2hr flight it felt like in my life, they made arrangements for me on the plane, to sit in front so I could get in and out and the pilots made an announcement to pray for his safety since I still did not know the real condition until I got to there, from Green Bay to Staten Island it felt like forever, but only a few hours time door to door.

When I got there, I held my son for the first time in a long time, but it was already too late, too long without oxygen had created brain damage, his eyes still dilating but the damage severe. We spent the next day praying beyond and on Nov 2 felt the angels.  The feeling covered the room, and I knew and felt in my heart they had come for him in that moment.  Within a minute or so, I felt it in my soul beyond.  A connection and feeling a grieving mother cannot explain in words.  It is the best I can explain.

Within the same time, the nurses who work beyond for my son and the doctor’s miracle workers said he was no longer responding, and they will do the final test on the 4th.

We all prayed and the love and support from all of you the miracles being requested felt. My heart and soul decided as I was placed in my sons bed to hold him as they where going to take him off the support, the organ donors came into the room and said to my ex, we honor your decision, not to donate, but that was a family decision, and I knew at that moment with all the love of our family there and stood around, that was the time to talk, and we all did and we decided that it was the miracles that you all had been praying for and another mother will get a call that their baby will be saved.

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 your own , epinephrine auto-injector on you.  Make sure it is NOT expired.  Just as you put shoes on your feet each day. Someone needs to invent this somehow… Always know the signs of Anaphylaxis, use epinephrine auto-injector BEFORE any Asthma medication! Always! ALWAYS DO ALLERGY TESTING AS SCHEDULED, IGe levels change and new allergens can come at any age.

He will forever protect you all… We love you

Joseph’s first love
His Mommy
Julianne

We love pictures and letter from your little ones to Joseph I read them and share each one with him each day.

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.  Not a second passes that I do not have the desire to be with him.  My world is very different and it is a pain that cannot be explained in words. Only felt.  At times it feels like my soul is out searching for him.  I am sure of it.  The world around still is going on for everyone,  but I am still sitting holding him like it was day one. Then a sign, 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… https://www.youtube.com/watch?v=iWaXqMQKTjw

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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    1. 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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