Our Mission:
Jumpin’ Joey is a courageous child who bravely fights the war his body throws at him every day. Joey has several disorders, Common Variable Immune Deficiency (CVID), Food Protein-Induced Enterocolitis Syndrome (FPIES), Environmental & Food Allergies, Asthma, and Mast Cell Activation Syndrome (MCAS). These disorders all are identified as Rare Diseases.
Jumpin’ Joey’s Journey is on a mission to host fun events throughout the year for rare disease pediatric patients in Connecticut along with their families and the community. These events will serve as a platform for us to spread awareness, and education on rare diseases. Our future plans include providing families who are affected by pediatric rare diseases in Connecticut, on summer camping retreats.
Our Story: (From The Mama Bear's Perspective)
The First Year: He was born under severe distress, and spent months in the NICU. His heart was enlarged, and not pumping correctly. His lungs were infected, and immature despite his gestation, and birth size. His body couldn’t maintain blood sugar levels. Joey’s body attacked every single food protein that entered his stomach, and intestines resulting anaphylactic reactions. Throughout the first year of his life, he barely gained weight, was frequently severely sick with infections, pneumonia, rsv, allergic reactions to vaccines, animals, every single food protein, the list was endless. Joey and I spent at least 90% of his first year in hospital stays, and doctor appointments. Things just were not getting better for him. He could not get healthy enough to recover and gain weight, His symptoms were not making any sense
Next Stop On the Journey: Meeting Dr. Nicholas Bennett in 2012.
Now over a year old, and still not tolerating food, or growing, and frequently extremely sick. A new issue developed with this blood work. We had given Joey several booster vaccines, over the course of the first year because his titers were not in effective range. After his 1 year checkup, the vaccine titers in the bloodwork came back with zero effectivity. It was like his immune system forgot that it has been vaccinated. His health was in serious jeopardy.
Dr. Bennett was the missing puzzle piece we desperately needed. I was a total disaster! I had formula from the feeing pump which exploded on my into the appointment all over me. In fact the formula leaked thru the bag, and all over the floor of the clinic’s room we were in. IT was a sticky, stinky mess! This was his first impression of me. Any other doctor would have easily thought, this mom is a whack job. In fact, many doctors had already dismissed me, and my son’s wonky symptoms.
Dr. Bennet walked in, stepped over the huge mess, and reviewed all the data. Then he started drawing pictures of the immune system, cells, their functions, how these cells were not working in Joey’s body. He was clear and he did not pass judgement on me. He understood my son’s symptoms! He believed me when I told him, how Joey’s body reacted to a dog’s nose rubbing his leg in the shoe store, or how every time you fed him a bottle of any type of formula, he got violently sick, same with every single fruit, protein, or snack (except for Cape Cod Chips). Or how despite having his tonsils and adenoids removed twice, Joey still snored, and he constantly had sinus congestion/infection. Dr. Bennett, took it all in. He didn’t argue with me over how I was wrong, or that what I had lived thru could not be true. Instead he developed a treatment plan for Joey.
IVIG Treatment and A Proper Diagnosis:
CVID: Common Variable Immune Deficiency: Our Zebra! Dr. Bennett had found the zebra we had been unknowingly searching for. (You can find out more information on CVID by clicking here.)
Treatment for CVID, requires infusions consisting of the IGG cells from thousands of blood donors. The product is called IVIG. For Joey Infusion days are long, sometimes scary, and sometimes painful. In early days, he would get poked multiple times to find a vein. It was traumatizing for both of us. He has a central line in his upper left chest area, it sits under his skin. The port allows guaranteed access to his veins. There has been issues with the port, and access. But for the most part it works very well. Joey’s body doesn’t accept the IVIG infusion easily, and will often mount an allergic reaction. To prevent this, he has pre-medication protocol of fluids, steroids, and Benadryl.
Since being on IVIG, he has grown, and thrived. He looks like a typical healthy child. He can eat many foods now also. But his life is far from easy. IVIG is not a “cure”, more like a band aid. Joey will require IVIG infusions from the rest of his life. Joey continues to have severe life threatening allergic reactions, often we do not know what caused them. These reactions shut down his GI system and kidneys, and it takes weeks to get everything back on track. In addition to his Common Variable Immunodeficiency Disorder (CVID) diagnosis, he also has Food Protein Induced Enterocolitis, (FPIES), GERD Reflux, Asthma, Autism, and Fetal Alcohol Spectrum Disorder. (click here for more information on these disorders.)
Our Beautiful Life, A Never Ending Journey: For now, we take each day one at a time. Every great day, is celebrated, as is every blessing. Because without fail, there is always a few rough days unknowingly on the horizon. We never know when Joey's body will attack its's self. So we do our best to be prepared for emergency situations, and live life as "normally" as we can. We have weathered the storm of divorce, and put our family back together thanks to Bob.
Despite everything he has gone thru, Joey is a happy, energetic, loving, child. His smile lights up the room. We have seen him time and again stop people dead in their tracks, and put a smile on their face, just from talking to him. He loves trains, race cars, glitter, owls, music, dancing, swimming and his favorite color is purple!
Now it is our turn to "Be The Change"! We are excited to create fun ways to give back to the rare disease community. Check out the Blog, and Events pages for all the latest news and happenings.
Jumpin’ Joey is a courageous child who bravely fights the war his body throws at him every day. Joey has several disorders, Common Variable Immune Deficiency (CVID), Food Protein-Induced Enterocolitis Syndrome (FPIES), Environmental & Food Allergies, Asthma, and Mast Cell Activation Syndrome (MCAS). These disorders all are identified as Rare Diseases.
Jumpin’ Joey’s Journey is on a mission to host fun events throughout the year for rare disease pediatric patients in Connecticut along with their families and the community. These events will serve as a platform for us to spread awareness, and education on rare diseases. Our future plans include providing families who are affected by pediatric rare diseases in Connecticut, on summer camping retreats.
Our Story: (From The Mama Bear's Perspective)
The First Year: He was born under severe distress, and spent months in the NICU. His heart was enlarged, and not pumping correctly. His lungs were infected, and immature despite his gestation, and birth size. His body couldn’t maintain blood sugar levels. Joey’s body attacked every single food protein that entered his stomach, and intestines resulting anaphylactic reactions. Throughout the first year of his life, he barely gained weight, was frequently severely sick with infections, pneumonia, rsv, allergic reactions to vaccines, animals, every single food protein, the list was endless. Joey and I spent at least 90% of his first year in hospital stays, and doctor appointments. Things just were not getting better for him. He could not get healthy enough to recover and gain weight, His symptoms were not making any sense
Next Stop On the Journey: Meeting Dr. Nicholas Bennett in 2012.
Now over a year old, and still not tolerating food, or growing, and frequently extremely sick. A new issue developed with this blood work. We had given Joey several booster vaccines, over the course of the first year because his titers were not in effective range. After his 1 year checkup, the vaccine titers in the bloodwork came back with zero effectivity. It was like his immune system forgot that it has been vaccinated. His health was in serious jeopardy.
Dr. Bennett was the missing puzzle piece we desperately needed. I was a total disaster! I had formula from the feeing pump which exploded on my into the appointment all over me. In fact the formula leaked thru the bag, and all over the floor of the clinic’s room we were in. IT was a sticky, stinky mess! This was his first impression of me. Any other doctor would have easily thought, this mom is a whack job. In fact, many doctors had already dismissed me, and my son’s wonky symptoms.
Dr. Bennet walked in, stepped over the huge mess, and reviewed all the data. Then he started drawing pictures of the immune system, cells, their functions, how these cells were not working in Joey’s body. He was clear and he did not pass judgement on me. He understood my son’s symptoms! He believed me when I told him, how Joey’s body reacted to a dog’s nose rubbing his leg in the shoe store, or how every time you fed him a bottle of any type of formula, he got violently sick, same with every single fruit, protein, or snack (except for Cape Cod Chips). Or how despite having his tonsils and adenoids removed twice, Joey still snored, and he constantly had sinus congestion/infection. Dr. Bennett, took it all in. He didn’t argue with me over how I was wrong, or that what I had lived thru could not be true. Instead he developed a treatment plan for Joey.
IVIG Treatment and A Proper Diagnosis:
CVID: Common Variable Immune Deficiency: Our Zebra! Dr. Bennett had found the zebra we had been unknowingly searching for. (You can find out more information on CVID by clicking here.)
Treatment for CVID, requires infusions consisting of the IGG cells from thousands of blood donors. The product is called IVIG. For Joey Infusion days are long, sometimes scary, and sometimes painful. In early days, he would get poked multiple times to find a vein. It was traumatizing for both of us. He has a central line in his upper left chest area, it sits under his skin. The port allows guaranteed access to his veins. There has been issues with the port, and access. But for the most part it works very well. Joey’s body doesn’t accept the IVIG infusion easily, and will often mount an allergic reaction. To prevent this, he has pre-medication protocol of fluids, steroids, and Benadryl.
Since being on IVIG, he has grown, and thrived. He looks like a typical healthy child. He can eat many foods now also. But his life is far from easy. IVIG is not a “cure”, more like a band aid. Joey will require IVIG infusions from the rest of his life. Joey continues to have severe life threatening allergic reactions, often we do not know what caused them. These reactions shut down his GI system and kidneys, and it takes weeks to get everything back on track. In addition to his Common Variable Immunodeficiency Disorder (CVID) diagnosis, he also has Food Protein Induced Enterocolitis, (FPIES), GERD Reflux, Asthma, Autism, and Fetal Alcohol Spectrum Disorder. (click here for more information on these disorders.)
Our Beautiful Life, A Never Ending Journey: For now, we take each day one at a time. Every great day, is celebrated, as is every blessing. Because without fail, there is always a few rough days unknowingly on the horizon. We never know when Joey's body will attack its's self. So we do our best to be prepared for emergency situations, and live life as "normally" as we can. We have weathered the storm of divorce, and put our family back together thanks to Bob.
Despite everything he has gone thru, Joey is a happy, energetic, loving, child. His smile lights up the room. We have seen him time and again stop people dead in their tracks, and put a smile on their face, just from talking to him. He loves trains, race cars, glitter, owls, music, dancing, swimming and his favorite color is purple!
Now it is our turn to "Be The Change"! We are excited to create fun ways to give back to the rare disease community. Check out the Blog, and Events pages for all the latest news and happenings.