The Babcock Trust
Like many families at the top of our income scale, my husband and I travel abroad at least once a year and go to a lot of restaurants. During our last trip, I had a conversation with a busy young female colleague at work who confided that she was allergic to gluten and took medication for it every day. She went on to say that she did not appreciate that she could end up in a lot of medical distress and embarrassment just because she does not like a particular food but would never say anything to me. I understood.
If my husband and I were even remotely allergic to anything, we would never, ever eat it. But there was a child in our restaurant group that had a rare food allergy, and it was her burrito that elicited my colleague’s reaction. So over the next few days, my husband and I visited my daughter in hospital in an anxious environment. She was a healthy, happy, perfect little girl; very polite and polite but something had amiss.
She did not have an illness or telltale symptoms other than the usual flu-like symptoms, but she was receiving a very high amount of immune-boosting medication because she was not able to eat meat, eggs or wheat. The doctors suspected that there was a problem with her spinal cord and figured out that she had both IgE antibodies to wheat and gluten in her bloodstream.
She was diagnosed with an auto-immune disorder called ataxia, which is a group of auto-immune diseases in which the immune system attacks the nerves. In the case of my daughter, it also attacked the nerves in her eyes.
She was also listed under an autoimmune disease known as antigens syndrome. When you meet people who suffer from this affliction, they usually say, “I don’t know if I am positive, but you could describe me as a C-cup person, if that makes sense.” People in this age group often carry an immune response on their skin that causes inflammation and swelling in the skin, joint, mouth, and face. Patients are taken to the operating room with severe swelling of the skin and lots of redness, swelling, and redness.
The first thing that came to my mind was that she was miserable. I didn’t want to hear that because we have managed our family without any significant medical challenges in the past, and I didn’t want to panic, but the wait times for children to be transferred between hospitals was very long. How would we get to doctors quickly and get them to take our daughter to specialists in the children’s division? We were talking days, not hours, and I felt like it was becoming a distraction from the work that had to be done to keep our daughter safe.
My daughter had been admitted to the Children’s Hospital in Boston last week because of the number of allergens in her system.
The hospital wanted her to come to Boston for the 30th birthday of her best friend, Alex, because Alex had the same symptoms that she was suffering from, too.
She fell in love with the beautiful setting of the children’s hospital when we visited, the wide-open corridors and bright colors, and, of course, the spectacular flower beds. She could not wait to get out of her bedroom and outside and see the open spaces.
When her little friend, Alex, was handed the burrito, it was the first time we saw her happy and smiling. Alex carried her warmest blanket to protect her from her cold and she appeared to be in much better spirits.
The next morning, the doctor called to tell us that the eating allergy was gone.
A new normal had been restored. She felt much better and hopefully, she will be doing fine for the next few days. And, that’s how we will leave it – in good spirits, no longer tense, and hopefully, getting back to more normal routines.
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