Fresno family starts holiday campaign to raise funds for baby with rare disease
A Valley family is staying strong for their little one as he battles a rare condition.
FRESNO, Calif. (KFSN) -- A holiday at the hospital. The Lazaro family spent Thanksgiving not at home like many families, but by the bedside of their young son, Rykker.
We first met Rykker when he was just a month old and diagnosed with a rare disease Spinal Muscular Atrophy type 1.
SMA causes respiratory issues and leaves Rykker more at risk if he catches a viru,
The now 14-month-old recently caught two.
He was admitted to Valley Children's just days before Thanksgiving with a collapsed lung and stayed there for more than a week after.
"I think what makes it special is the memories that you have with the people that you love," said Richard Lazaro, Rykker's father.
"And I think that those memories could be made in any scenario, in any scene. So for us, it was just important to be there with him."
His parents, three older siblings, and twin brother don't let time in the hospital dull the holiday spirit.
Rykker has appointments 6 to 8 times a week with specialists to address his symptoms pushing him to new milestones.
"Getting to the age of one is a big milestone, like I mentioned, 65 don't make it to that percent of SMA type ones," said Lazaro.
"Now, the biggest one would be getting past the age of two, because, as history has shown, 95 don't make it past that. So, we're hoping that everything that we're learning about the disorder and the way the muscles move, and the specialists that we're taking them to, kind of all helps out."
Most of his care is at Valley Children's, but the family also travels to Stanford.
At home, he depends on several machines that cost tens of thousands of dollars.
"This CoughAssist was $35,000," said Lazaro. "$35,000, and then the shaker vest was like $40,000, $45,000," said Lazaro.
To help pay for care and raise awareness about SMA. They've created a foundation called Rykker Strong.
On Giving Tuesday, they kicked off a campaign lasting through the end of the year to gather donations and help their little boy fight this rare disease.
If you would like to donate click here.
For news updates, follow Kate Nemarich on Facebook, Twitter and Instagram.
