Fresno 1-year-old with untreatable, rare disease spending final moments with her family

ByNic Garcia KFSN logo
Thursday, November 2, 2023
Fresno baby has untreatable, rare form of spinal muscular atrophy
Like most one-year-olds, Damaris Perez spends a lot of time playing in her crib. The average person wouldn't know this baby has limited time left on earth.

MADERA COUNTY, Calif. -- Like most 1-year-olds, Damaris Perez spends a lot of time playing in her crib. The average person wouldn't know this baby has limited time left on earth.

"It's been different, calling the hospital home, but we're trying to make the best of it," says her father, Alejandro Perez.

In mid-September, Damaris was diagnosed with an incredibly rare case of spinal muscular atrophy, or SMA.

"Children with this condition, depending on the severity, may not develop, even lose their ability to sit, walk, and eventually they develop problems swallowing and also breathing," said Dr. Raymund David, the director of the Muscular Dystrophy Association Clinic at Valley Children's.

"Right away the first thing we thought was OK....there's medication or there's clinical trials," said Alejandro.

But their hope was short-lived. The kind of SMA Damaris has is so rare, she's one of just 25 cases worldwide. There is no treatment. Her prognosis is terminal. Her parents are devastated.

"Loss for words. Even more so after hearing that there are no clinical trials. There's nothing we can do. It's just a matter of time," said Alejandro.

The mom and dad of this little girl, who just made her first birthday wish, are now being asked about their final wishes for her life.

"Seeing her smile, that's what keeps us moving forward, definitely," said Alejandro.

They're doing their best to make her comfortable. She relies on breathing treatments since her left lung has collapsed, and the right one is only functioning at about 40%.

They're working toward taking her home with a nurse. But above all, they're praying for a miracle.

"Every day that we wake up, we look forward to seeing that smile and thanking God for one more day," said Alejandro.

"Every day is a gift," adds her mom, Miriam Perez. "Live day by day, enjoy every single day that you have."

Mom and dad are thankful for every hour they have with Damaris. The sound of the little girl's heartbeat was recorded and placed in a stuffed animal for her family to cherish. This will serve as a reminder of the joy Damaris brought to her parents.

For now, just as they cling to her little hands, they're clinging to a wish.

"While she still has breath in her lungs and her heart beating, there's still hope," said Alejandro.

The family tried getting life insurance for little Damaris, but given her condition, they were denied.

They've created a GoFundMe page to help with medical expenses and, ultimately, a funeral.