I look into the eyes of two year-old Addie suffering yet smiling through her pain after over 20 episodes of anaphylaxis. Addie has to stay home because anything in her environment can cause her to have a life-threatening reaction. It is hard for people to believe that one could have so many times of nearing death, but this is the sad and bitter reality of many people with mastocytosis. I know this because I have mastocytosis. You and your caregiver get worn down telling the story, explaining the condition over and over again, the ER visits where you often have to break through walls of ignorance either wilful or simply because they too do not know. I have had nurses and doctors minimize the seriousness of my condition. I have had my oxygen taken off by a nurse because she made an arbitrary decision that I did not need it, which I submit allowed further damage from mast cell activity to continue. I have even been accused of being a malingerer. I was told by a medical receptionist that the doctors didn’t want me coming to the medical centre because I am too complicated a case.
This is your journey like it or not because so often we have been left alone to deal with myopic doctors and nurses who just do not want to get it, who feel you are a bother they want to go away. You ask for help and there are caring people who are there for you, who do their best to understand. They take time to hear your pain and they don’t go away. These are the people to be treasured.
There is a blessing in being a child. The doctors and specialists don’t doubt the symptoms of a child. They give them the care they need. I wonder though how many times parents get blamed for the many times their children with mastocytosis end up in the ER. I know this happened to my sister when she took her daughter to the ER multiple times with her asthma. Questions were asked like these. “What did you expose ____ to that caused her to end up here? Why aren’t you having your daughter avoid all of the triggers that cause these asthma attacks?”
There are doctors and nurses who care, listen and understand and there are those who judge you. They say all that is happening to you is your fault or that you are not as sick as you say you are, as sick as you know in your heart and in your mind you are. But how can they truly say that and believe it when there are those like Addie who are basically allergic to the world? Addie’s family are asking for our individual and collective compassion and our prayers as they struggle, as they themselves are assailing the gates of Heaven for Addie to get better, for her to have a caring community fund life-saving treatments that will improve the quality of her life. That is all anyone with chronic and rare conditions ask, someone, anyone to reach out and offer that loving, strong and caring hand that leads to hope.
Addie is “dealing with a GI bleed, leading to a blood transfusion at 15 months of age. The GI bleed comes and goes, and continues to be problematic. (GI bleed stands for Gastrointestinal bleeding). She has had numerous endoscopies, colonoscopies and biopsies where KIT mutation was found. I tried to understand what a KIT mutation is, but all the web sites explain it in complicated medical terminology I don’t understand. She only has 3 safe foods currently that include boiled chicken, white rice and some apple. She is on an elemental diet at this time, Neocate Jr. Her GI complications include the bleed, projectile vomiting that lead to shock, bloody diarrhea and extreme stomach pain.”1
Many of you have read my thoughts about this terrible condition. You can get it at any age. It is a neighbourhood block party that is out of control. Think of the mast (immune and systemic) cells as the unruly party crashers. With a mast cell attack more and more unwelcome characters keep coming to this noisy party. This raucous party can go on for several hours to days. It takes the mast cell stabilizer police to break up the party. However, sometimes this party can’t be broken up at the right time. This is when the mast cells can kill you as they keep multiplying leading in many cases to anaphylaxis and as with me cause neurological damage that leaves you disabled for the rest of your life. If the mast cell attack is not brought under control the person can go into coma and die. I know. There have been many times I just felt like going to sleep. My doctors, specialists and paramedics say this is the worst thing you can do in an anaphylactic attack, to just give in to it, to not fight to breathe, to pray for an end to a life of ongoing struggles, of trying to get people, trying to get the media, trying to get the government, trying to get anyone to understand a disease that many doctors don’t yet understand.
As you read Addie’s story please hear it with your heart. Help Addie live to keep shining that smile as she teaches us what love means that is given when your body is in unending pain. Addie, and Addie’s family, you teach me that in as challenging as my mastocytosis is, there are others like you who suffer more.
I leave you with this thought.
“Bringing joy to another lights a thousand suns within.”
― Amy Leigh Mercree
Here is Addie’s story.