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Updated: May 14

Declan was born by emergency cesarean after having a very low heart rate during his birth. He had low blood sugar and was given some formula to help him. After the formula wasn’t helping his blood sugar as much as we thought it would, he ended up in NICU. At the time the doctors thought he had sepsis because he ended up in shock. Knowing what we know about Declan now, we believe this was the first indication of what was to come for him.

Declan was a very fussy baby. He cried all the time. He slept rarely. He was always our baby who threw up on everyone. We would hand him to people with a blanket to catch his “spit ups” that inevitably ended up all over. Declan had failure to thrive. Our middle child had a milk protein allergy so at first we thought maybe that was Declan’s issue too. Around 4-5 months old, Declan had a huge reaction to rice cereal which we were using in an attempt to help his vomiting. At that time he had what seemed like a classic acute FPIES reaction. We were happy to know that his symptoms could be explained by FPIES. We eventually ended up off of breast milk and onto various formulas before landing on neocate. Neocate was the best thing for Declan and at 8 months he started to grow and develop more appropriately. It seemed like things were going to get better and he started to sleep more.

After Declan switched to neocate, we started our journey to find foods Declan could eat. When Declan was 11 months old we tried watermelon as a food trial. By this point in time we were calculating every single exposure to every single food over a period of time to attempt to find foods he could eat. This food trial was the first time Declan experienced anaphylaxis.

At this point we could no longer call this FPIES. Eventually, Declan’s team of doctors said the words that I feared so much as his mom “we think that the most likely thing is some variation of systemic mastocytosis”. By the time we started medication for mast cell activation Declan had experienced multiple anaphylaxis and had even had anaphylaxis to his G-tube surgery. We learned that Declan’s triggers for anaphylaxis went far beyond the food he was eating. He has had anaphylaxis to pain, heat, viruses, scents, stress and emotions, and foods. Since we started to treat Declan for mast cell activation his medications have stabilized him so much. He has had anaphylaxis nearly 100 times in his life but has continued to improve so much over the past few years. He went from having 30+ anaphylaxis in a year down to 5-10 per year.

Declan’s mast cell activation causes several other issues for him as well. There are mast cells everywhere in our bodies; a disorder of the mast cells can cause issues anywhere throughout the body. Declan has asthma and takes medications to help with this. Declan also has autism. He has childhood apraxia of speech and continues to have challenges with his speech. Declan also has hypoglycemia. We didn’t realize how significant this was for him until he was 6 and he experienced some extreme lows. In hindsight, this has been an issue for Declan his whole life and was the initial reason for his NICU visit at birth. It wasn’t until his mast cell activation was stabilized and he didn’t require tube feeds as frequently that his symptoms became clear. Declan uses a continuous glucose monitor for his blood sugars and we are constantly managing his blood sugar levels.

Declan has come a long way in his nearly nine years. He has grown into this amazing little boy with so much love and joy. Seeing the boy he is today was something we only dreamed of when he was small. We have grown to understand his disorder and he has learned to work within the parameters of his mast cell activation to help prevent some of his big reactions. His stability is something we will never take for granted and we can only hope it is here to stay. Declan’s favourite subject is math and he is a good friend to everyone. He is a Pow Wow dancer and takes so much pride in his culture. He loves to play hockey and can be found nearly anytime with a hockey stick and a ball “just to shoot around for awhile”. Declan loves video games and playing games with his friends. He is a funny little guy and loves to make people laugh. Declan’s life is no longer consumed only by hospital and clinic visits and he is truly experiencing being a little boy. His mast cell activation syndrome will never go away and is constantly something we have to manage. We will never be free of the fear that “anaphylaxis to life” has put into us, but seeing Declan thriving like he is today is the dream we only dared to dream and we are so grateful to be where we are.

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