Malachi is One in a Million – In More Ways Than One
Malachi is a shy, artsy five-year old who loves to draw, do puzzles and listen to music. When his older brother, Dakota, gets home from school, the two often head outside to get into some healthy mischief.
You would never know Malachi has a rare chronic condition, Cystinosis, that he shares with only about 500 other people.
“Every cell in our body produces an amino acid by-product called cystine that gets washed out of the cell,” says Malachi’s mom, Jodi. “With Cystinosis, the cystine crystallizes and stays in the cells, preventing growth and causing organ damage.”
Jodi and her husband, Alan, noticed that at nine months Malachi was losing interest in food, drinking more water and avoiding putting weight on one leg. Their pediatrician recommended a GI doctor, who tried various treatments for three months, until finally admitting him to the hospital, where he stayed for 10 days.
“That was a rough time,” says Jodi. “It was a relief to have a diagnosis, but to learn that it was a genetic disorder with no cure, that he was coming home with a G-tube for nourishment and for delivering the 10 different medications that would save his life by helping his system flush out the cystine – it was a lot to process.”
At the hospital, Jodi was given information about Good Days, but initially put it aside as she coped with all she had to do. Jodi firmly states, “I now thank the Lord that Good Days was there because I really don’t know how I would have done this without them.”
Malachi still has his feeding tube, but now it’s mostly for the medications needed as he’s eating enough to grow. The plan is to remove the tube before he goes off to kindergarten. However, he still receives medication six times a day and his levels must be constantly checked to ensure that all his organs are washing away the amino acids.
Good Days helps with the cost of treatment and travel expenses. The nephrologist who correctly diagnosed Malachi said the condition was so rare she’d only seen it in textbooks and recommended the family connect with the National Institutes of Health. There, the monitoring of Malachi’s rare condition adds to the research everyone hopes will one day lead to a cure.