"The main aspect is that he struggles to learn. Even if we spend weeks or months learning a specific skill, and he does finally seem to learn it; within a couple weeks, it just disappears," said Tristan's father, Kevin Witt.
"It's really tough," said Tristan's older brother.
At 15-months-old, Kevin and Michaelle Jinnette-Witt learned Tristan had KCNH1 gene mutation or Zimmerland Laband Syndrome. It's a disease so rare that only 50 people are diagnosed with it in the entire world, which makes it difficult to find a doctor who can help.
"No doctor! Essentially, there's one doctor in the world who has had a couple of these cases, but every other doctor in the world who gets a KCNH1 case has never seen it!" said Michaelle.
One of the things they struggle with most is that he is non-verbal.
"The one that hit me hardest. I don't know why, but even in my wildest, worst case scenarios, I never thought that my little boy won't be able to talk to me," said Michaelle.
And he also suffers with seizures.
"It took a long time for it to sink in. It was a fresh gut punch. I'd wake up in the morning and it would come rushing in and then about a month after the diagnosis, he had his first seizure," cries Michaelle.
He’s had some medical care at Rady Children’s Hospital, but the family needs to raise enough money to fund the necessary research to develop life saving treatments for Tristan.
"Our goal is $1 million so we can get effective treatments," said Michaelle.
"The hopeful goal is that Rady's will be able to administer it," said Kevin.
They've started many fundraising campaigns in hopes that little Tristan can live a better life.
To donate to their GoFundMe page, click here.
To donate to their non-profit organization that helps find a cure for KCNH1, click here.
WATCH RELATED: Mitchell Thorp Foundation has helped families with sick children to the tune of over $3,000,000 (Nov. 2022).
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