In early October 2015, I was sending most of my time trying to figure out how to feed some mast cell kids who couldn’t eat anything but breast milk produced on a very, very restricted diet. There were two kids struggling with this seemingly impossible problem. One of those kids was a little boy named Lucas. His mother, Kristina, is my friend. She had been on a single food diet in order to produce breast milk he could safely eat. She herself was a mast cell patient and the combined effects of mast cell disease, malnutrition, and fear for her child ravaged her body.
Lucas had been admitted to a California hospital for months, thousands of miles from home in Florida. After a long series of setbacks, Lucas’ doctors were okay with letting him go home so that their family could rest to try to introduce foods or IV nutrition again at a later time. On the day he was being discharged, a friend called to tell me that Kristina was in the emergency room.
Over the next few hours, our friends and I called each other, talked to Kristina, and later to her mother and husband. Things progressed very quickly and soon Kristina was unresponsive and intubated. It would be days before we knew what had actually happened – Kristina had suffered a catastrophic pontine stroke in her brainstem. The pons is the place where your body integrates sensory and motor information to allow movement. Despite being completely aware and as intelligent as before the stroke, Kristina was unable to move or communicate.
I have written about Kristina and visiting her before: here, here, here, and here. Both she and her son Lucas require ongoing care for mast cell disease. She is home now and requires 24-hour care every day for the rest of her life. Her care is phenomenally expensive. When I visited Kristina in Florida last year, I was immediately struck by how much pressure her family was under to care for her and Lucas.
After several months of managing care for Lucas and Kristina, the Brightbills and Dalys have decided that the best path forward is to live under one roof. This will allow a better, safer environment with a built in support system. As you can imagine, on top of all of their other expenses (to the tune of $8000/month), this construction will be expensive, but necessary.
I have never accepted money for writing this blog or answering questions. I do not believe that people should have to pay for access to information that could affect their health.
But if you have ever wanted to compensate me, or to repay me in some way, please feel free to make a donation to Kristina and her family.
I care for Kristina, Jed, Lucas, Linda, Katie, and the rest of the Brightbill/Daly family deeply. Please help them if you can. Helping them is helping me.