Last October was a nightmarishly dark time. My friend Seth had a catastrophic metabolic crisis a few days before his third birthday so severe that I honestly cannot believed that he survived. He was in the hospital in California trying to sort out effective and tolerated IV nutrition when he crashed. Seth is a mast cell kid with no safe foods. None.
As impossible as it sounds, Seth was not the only little boy at that hospital in California with no safe foods. There was another little boy there named Lucas, who also has mast cell disease. These little boys and their parents became very close friends, bonding over the absurdities and terror of having young children who can’t eat. Lucas’ mom, Kristina, was also a mast cell patient. When Seth was crashing, Kristina called me and we worried together.
At the time that Seth was having his metabolic crisis, Lucas was a year old and exclusively breastfed due to his frightening and prolific food reactions. Kristina had removed almost all foods from her diet in order to provide nutrition that could Lucas could tolerate. Eventually, she was only able to eat quinoa, organic cantaloupe and one brand of safe water. She herself was predictably experiencing physical issues from such a restricted diet. Her breast milk was Lucas’ only safe food and she sacrificed her health for his.
The week after we worried together on the phone about Seth, Kristina was preparing to take Lucas home to Florida after months admitted in California. On a Friday afternoon, she had anaphylaxis, and then she had a stroke. No one realized what was happening until it was too late. In a matter of hours, Kristina became a prisoner in her own body. The stroke was in her brainstem and she has locked-in syndrome. She is 26 years old.
Kristina is completely aware and able to understand everything happening around her but cannot move or speak. She is able to communicate by blinking while someone points to letters and spelling words in this way. She continues to have ongoing health issues secondary to the stroke and mast cell disease. Her needs are very, very complex.
After months of inpatient care and stroke rehab, Kristina will be going home to be with her devoted husband, their son and her family and friends. Her home has required significant remodeling and she needs round the clock care to stay safe. Kristina also needs a vehicle that can transport her in her chair in order for her to be able to safely go home. As you can imagine, meeting all of these needs is a massively expensive and time consuming undertaking.
Parents of mast cell children often say that they would give anything to help their kids, that they would gladly lay down their lives to stop their children from suffering. Kristina literally gave everything she had to make her body a vessel capable of producing a food that her son could eat.
If you have ever been helped by this blog, or me, or anything I have written, please help my friend, Kristina.
Kristina’s family just found out about this contest to win a van that can transport her in her wheelchair. Please vote for her. Voting closes in two days but it is still worth a shot. If the link doesn’t work, please cut and paste the following address into your browser:
If you are able and would like to donate there is an ongoing fundraiser for Kristina and Lucas, who will both need expensive lifelong care. Please cut and paste the following address into your browser:
Many thanks. Please keep this family in your thoughts/prayers/good intentions. There is always hope.