Joseph DeNicola Allergy Journey #Anaphylaxis #1moment4Joe “The lesson, we all believe we have more time”

Each year we hold #1moment4Joe

The lesson we bring by Joseph’s story is the importance of time.  Awareness means, acting with knowledge.  So lets start with important facts before we explain the events that took place so you can see why time should be part of everyone’s awareness.

I hope the following information helps you all to understand the risks.

Yes …. you should take the time to raise your awareness since we are all at risk, at any age and any time.  Lets start with a short 8 minute video that explains what is Anaphylaxis and what is happening that you are not seeing externally and why preparing yourself or a loved one with the proper administration of Epinephrine ( auto-injector ) ONLY prepares you to get to the proper emergency medical treatment that is needed.

I would like to stress that Epinephrine is not a cure, it is not the only treatment that will be needed, it is to give you “TIME” to get to that hospital.  We in the community internationally know it is important to ALWAYS carry two.  That is what “Being Prepared with proper medical resources” means.

So lets start with this 8 minute yes it is only 8 minutes long.. to understand what is taking place and how a mild reaction the first few times, can turn into Anaphylactic quickly, or onset without any known prior reactions.

Here is a video explaining Anaphylactic shock.

Again, 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 reaction.  A reaction, regardless of mild to severe means seek medical care.

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. Seeing an “Allergist” is required.  I am stressing that importance, because many people do not seek the proper medical professional.

Never leave without a prescription for epinephrine.  I do not care if the doctor does not offer a script, you ask for one, and anytime you are seen for a reaction, again you ask for a new prescription.  Fill it and keep it on hand.

It should be part of everyone’s medical cabinet, and readily available, but we are all working on that as well the costs here in USA. NEVER LEAVE WITHOUT A SCRIPT, demand for one..

My own personal experience after many years of awareness by great professional medical doctors from Boston Children’s Hospital -Harvard and NYC Mt. Sinai, I got the best for Joseph after the lesson of the early years with not the correct direction of doctors.  When I was just learning as so many of you are just starting out.

Next few minutes we ask you to watch this video to knowing the signs and when to use epinephrine.  FIRST AND BEFORE ANY OTHER MEDICATION … including ASHTMA medications..

The ONLY life-saving medication is epinephrine PERIOD… again not a guarantee or a cure and ONLY to give you more TIME for medical professional care

When to Use EpiPen

Asthma or Anaphylaxis

Again with Joseph “Time was the difference”, auto-injectors work for severe asthma too. Joseph had been placed on his nebulizer before administration of his auto injector. 

That few minutes of treatment, and delay, is why we stress why time is so important. 

EPI FIRST before ANY other medication and FAST.  We will explain this in his story but here is a few more helpful resources we would like to offer, to bring awareness.  You can learn more at AAFA.org.  

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

ALWAYS CALL 911.  Advise them of what they are expected to be prepared for.  Again we are preparing to get our loved one and or self to have the best possible outcome, so we have already administered our epinephrine auto injector, and now we MUST call our emergency rescue.  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, additional treatments, reactions can resurface hours after. No you or your loved one are not in the clear until after professional medical attention is received and you are cleared by them.

Tracheostomy might be needed, 911 (emergency service) is very important and clear communication with them, again time is very important. 

In each death, unfortunately TIME plays a key role.  Acting quickly is very important.

At Joseph’s services on November 10th I comforted the doctor whom worked endlessly on Joseph.  He said to me ” Mrs. DeNicola I never gave up on him”.  I looked into his eyes and seen his pain, and said ” I thank you so very much, and know I only wish he got there for you prepared by receiving his Epi within TIME”.  I will never forget a few conversations, and that one one of the hardest, the Emergency Room doctor that first received Joseph.  His eyes, I will never forget, and his heartbreak.  I pray for him often.  They are miracle workers and do the best with what they are delivered and have available.  This I have learned, from our experience.  It takes a village, so prepare with epi, please.   Many lives are touched by each moment until the end of treating a life taking reaction such as Anaphylaxis.  Nurses, doctors, staff, friends, family our loved ones, you…

Apology on the length, of this but I want to give as much detail, as it was a journey.  At this point, you are aware of what anaphylaxis is and the first line of saving a life details.  From here forward, I will be telling Joseph’s journey so it is very lengthily for those who want to understand the details.  Otherwise, I thank you for taking the time to coming to hear his voice, gathering the basics of saving a life, including your own.  I am always here to help in anyway, as I am his voice.  All I have left and I have no off button.  Call upon me anytime.

So, his journey… lets start with the younger years…

Since I was high-risk pregnancy, I was placed on weekly progesterone oil shots, with hopes he would not be as premature as my older son, my first miracle.  Anthony, only 17 when his younger brother passed away, had no allergies but did have asthma when he was very young.  Anthony, I was given steroids’ to help develop his lungs, but we made it to week 27 weeks.  I was told I was never to have children, due to health issues, but here I was with Anthony and then Joseph 10 years apart.  Joseph was delivered closer to full term.  Anthony could not wait to get out, and Joseph did not want to get out.. my boys.

No one in the family had Anaphylaxis.  Joseph had food allergy reactions from a few months old, first hives, then swelling, then a combination until his first Anaphylaxis shock reaction. This was not Joseph’s first reaction.  We kept him safe for years, cross contamination, progression of his reaction and the proper doctors.. He had to go through a lot.

One thing after the other took place for Joseph.  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.  Labor, progress.. and off they took me for an emergency c section.  Again, for my first I was natural, no time for epidural or c section.  Again, giving information for research and others that might want to understand details, we are still looking for a cure and cause so sharing a lot is important.

I had a high fever those few days after his birth from the surgery, I was not in good condition at all.  I could not breastfeed, with the drugs that they had given me, right away like I did for Anthony.

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 we went through a series of different formulas, until we had been left and placed onto a soy based.

Within the first two months, Joseph developed a hernia.  Now Joseph had to be placed under for surgery.

Next we had been told about a heart murmur that had to be closely monitored. My child was already at more doctors in his first few months, then I could keep up with diaper changes it felt. Never left his side, taking a cot and sleeping in his room next to his crib, just to listen to him.  This remained with Joe and I, I worked more from home, I was blessed to be able too.  I was his voice, since he had a very thick speech impermeant, and I never left him as much as I could.

So many questions, just how much could my child take, his immune system in those first few months. Especially having to have been placed under for his hernia surgery at such a young age.  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.  Horrifying that a doctor had told me to do so, that back in 2007.

We have come so far in the community, as we look back… my child could have died.  Benadryl is for seasonal allergies not Anaphylaxis.

Reactions, grew worse overtime, swollen eyes, cough.  Each time, we called our regular pediatrician, again this was 2007, and we have raised so much awareness since that time the importance to seeing an ALLERGIST.

Some doctors really need to work on better protocols associated to Anaphylaxis/Allergies, yes I will say it.   I’m that advocate in the community! I call it as we see it! I’ve heard so many close calls, scary close calls, lack of awareness on many parts, so many share in our groups, we hear a lot first hand and we offer help to getting them headed to see proper PROFESSIONAL MEDICAL ALLERGISTS.  It’s so important.

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.  We called 911 as he was in my arms, blue and no breath.  I had no idea what was happening to my baby, and this was the first time I seen within minutes, we almost lost Joseph on my way in the ambulance on the way to the ER /Hospital.  I actually seen the fear in the EMT workers eyes, me still unclear what was happening.  They saved his life, within minutes the doctors admin meds, IVs so many working on my little baby I felt so helpless and could not understand since I had and my spouse had no understanding of Anaphylaxis.

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.  I won, many days and calls and interviews, as parents we know this battle.  He had one each year, yes his allergies had been that bad, plus he had a very bad speech impermeant.

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 complain to me.  My Joseph…

So many people came to us during his last battle, did so much for him and us,  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.

Here is our Joseph, on a ride with his uncle.  How he looks at everything and everyone around him, his laugh made you laugh, he was just a 7 year old happy boy but touched many people and his story will continue to do so… as his mother I will be his voice…

So what happened on the day of Joseph’s last Anaphylaxis shock, the fight for his life… after his safe day at school….

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 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.
2. It was not inhalation, it was cross-contact. A small amount is all that was needed.  Joseph did not have asthma.  ( see medical letters)
3. There had been numerously reported tabloids such as Staten Island Advance and other known propaganda that piggy backed on their reporting such as the NY Post.  SI Advance who incorrectly reported about events and was more focused on a family friend member who had been a known local neighborhood celebrity.  They, took more pictures of that member than family and friends.  Disgraceful tabloid.  They left the FA community with more questions than answers during that time.  Horrible what they did to so many people.  The FA community remembers it well.  The truth shows for itself always.  I had no time for contributing to any of it, as family and friends brought the non sense to my attention, I told them its garbage tabloid, not worth anyone’s time.  I was with my child nothing else mattered to me.   Luckily, known food allergy community members newspapers/bloggers/advocates took control to bring proper prospective to calm the community, I am grateful you know who you are and I thank you in my absence to the care of my son.  When I was able, I did reach out to thank the community, we are many and we are a close community, it takes a village for one child.
4.  I will always say that his father “did the best HE was AWARE to do”. I had been the safety for Joseph his whole life and during divorce the legal system failed him to be as kind as I can.
5. Communication, was not broken ever on my end regards always will be with the FA community.  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. 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.
6. Again, to clarify Joseph did not have asthma as falsely reported. The stressors of separation/loss of the norms during our divorce had not helped anyone in the family as many are aware, too.  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 after each progressive stage.   He had been seen in the hospital a few months prior to his death, due to an acute Anaphylaxis reaction, why such was available on the day to his last reaction I was told by his health care providers.  Again, Joseph had been in the care of my ex husband who we been in a divorce process at the time and I had to learn of things after his death, not voluntarily by his father.  I want to be clear on that, since my healing had to be clear as to all events that actually took place with my son.
7. Based on Joseph’s father and his family members that had been with him on the day of his last reaction : At the time of signs of having trouble breathing he was told to relax since he had been running around with the other kids. It is unknown how long it took for them to decided to take him home from the families home.  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.” 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 by me, and his father was always hesitant and that would have been the first time, it all breaks my heart as his mother to think about what he was feeling all of it.  Again, his father did the best he was aware.  Since, the nebulizer treatment 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. 
8. 911 was not called.
9. By the time, Joseph at the hospital he had already been in cardiac arrest based on medical records and doctors who treated him.  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.
10. I arrived within a few hours from learning online without anyone calling me, but by a tweet by my older son as Joseph was in the hospital.  I called my sister right away to get there since I was 2 hr flight away. Once I arrived, he was already at the state of being on life support and suffered already to much loss of oxygen, he was in an induced coma as his brain already suffered to much.  Nothing stopped me from doing everything a mother can possibly do.  I never thought I had to explain to my child what heaven would be like and angels, it was hard to talk about to him, I felt is fear in those days and I still do, I cant get myself from not thinking of what my child faced each moment. I’m still trying daily myself, to get unstuck.. it’s hard.  Survival is hard everyday, as a grieving parent.  Well let me not talk about me, this is about my Joseph.  Day 1 is still with me and will be forever.  The days that followed, I cant describe in words.  He was so brave, I hold in my heart until my last day, I know I will be thinking that this is what my child faced.. with hopes that we might see each other again.. or their might just be the end of this pain.

It had taken over 2 hrs for his heart to stop on the day he gave donations.  As a family, I explained that it was Joseph’s nature to always help others, and his love and the prayers from others could help other, and as a family myself and my son and his father as I layed holding my son in his bed as they came in for the final decision, we agreed to donation. My son Joseph saved many lives.

I know he shared many loving years and days with so many and I know he enjoyed his day in school at the most wonderful Halloween parade, with his classmates, 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” .  They always kept him safe, as I would advocate and sometimes feel like a broken record, but we had made sure we all worked to getting him the right resources to be included, that the most important.

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.

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, if he said I could give my body parts I would have.  I cannot express, those days in words.

So many of you brought in the best doctors, to telling me everyone did all they could have.  The blessings and love

It was up to Joseph and it was his way, to helping always everyone.

We celebrate two events each year to raise awareness.  You can mark the dates.  March 18th and October 31st.  You can go to facebook or social media and label a post in his honor at anytime #1moment4Joe.  We love you all..

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 of silence at 4 PM Eastern Time.  It is very fun event, all the pictures of everyone in costumes in the USA, the teal pumpkins, it is a time of year that is just Joseph. Always had been.

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My older son, was his hero, as they both are my heros, the loves of my life.  Their love and strength continues each day, stronger than I will be that I know and see each day.   That is how I live now, and cherish everything ever more.  Like my sons.   They are my sunshine.  Both always, yes always helpful and loving. Loved everyone,  animals,  plants, fish. Life.. Just love.

Joseph many 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 his years.  He made me see the world all over again through his pure eyes. My life. My older son said it the best.  Again, he was a glimpse of heaven here on earth.  Blessed to be their mom both of them.

Here are some pictures of over the year testing, and experiences… for those that are interested in learning more, keep reading.  To all of you, we all thank you with the most loving gratitude, we are always here for you all.  Please feel free to sharing Josephs story, to raise awareness.  I thank you

Julianne – Joseph’s Mom

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 to our home in Staten Island doctor Dr. Scott Sichierer Mt. Sinai NYC.   He is wonderful.

Boston , 2010 learning the different testing.  We made it into an adventure… You 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.

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”