A little bit of brightness
Nevaeh Silva, 9, of Hayden, pictured with dad, Jeff Silva, was diagnosed with Rett syndrome with a MECP2 Gene disorder, a rare neurological disorder that affects her brain. Nevaeh received an online shopping spree in December as a wish granted through Make-A-Wish Idaho. Photo courtesy of Jeff Silva.
From left to right, Jeff, Nevaeh (9),Jenny, Skyler (23) and Noah Silva (7). Photo courtesy of Jeff Silva.
At 9 years old, Nevaeh Silva is like any other girl her age with interests and dreams, but one thing keeps her captive. Nevaeh was diagnosed with Rett syndrome with a MECP2 Gene disorder, a rare neurological disorder that affects her brain.
“She can understand everything we’re saying,” said dad, Jeff Silva, of Hayden. “She’s just kind of trapped inside of herself.”
Silva said Nevaeh didn’t start showing signs of Rett syndrome until she was about a year old.
“She was just like a normal 1-year-old,” Silva said. “I could hold her finger and she could walk next to me.”
But over the next couple of weeks, Silva said Nevaeh’s behaviors started to change.
“She stopped doing everything and we didn’t know why,” Silva said. “We would just find her sitting in the corner of her bed staring at the wall or staring at the light. She wasn’t her usual self at all. She wasn’t up and curious, it was like she was scared.”
Silva said over the next eight months they brought Nevaeh to multiple doctors in different states and a handful of neurologists and finally visited a neurologist in Arizona who was able to diagnose Nevaeh.
Nevaeh has lost most of her physical ability and her speech from the disorder.
“Rett syndrome robs everything,” Silva said. “It robbed all of Nevaeh so a cure would just be so awesome, to have her walk or just … we’ve never heard her say ‘I love you’ or ‘Hi Daddy’ and those are things that are just the most beautiful things a parent can hear.”
One thing that gives Silva hope is knowing that there are people who care about families raising children with severe disabilities, and companies like Make-A-Wish Idaho who come up alongside these families to help them through the process.
Make-A-Wish Idaho’s mission is to grant life-changing wishes to children like Nevaeh who have critical illnesses.
“I have never been a part of an organization that’s as impactful as this one,” said Janie Best, president of Make-A-Wish Idaho. “I cry every single day. They’re usually tears of joy because we’re making a child’s wish come true.”
As of June 1, 56 wishes for North Idaho children have been granted, and 24 more wishes will be granted by the end of August.
“I would say that the most fulfilling part is being able to work with those families,” said Jamé Davis, a board member from Post Falls and a wish granter. “They’re so precious and these are just life-changing gifts you’re able to help be a part of.”
As a volunteer wish granter, Davis gets to build a relationship with a family, doing investigative work with the parents to figure out what the child’s wish is, visiting their home, sending cards, throwing little parties and preparing for the surprise reveal when the wish is granted.
“They probably have a sneaking suspicion but no idea that (the wish) is actually going to be fulfilled or granted, so just to see their faces light up is just the best,” Davis said. “It’s just getting to know the families and making their lives a little brighter.”
For Nevaeh, that brightness in the form of a granted wish came in December. Although the Silva family originally hoped for a family trip, COVID-19 caused some limitations on wish options. Silva said they picked an online shopping spree and were able to buy Nevaeh a lot of adaptive and stimulatory equipment that insurance wouldn’t cover to make her more comfortable, along with new room decorations.
“It was almost like every day in the month of December she got to open something so that was really cool,” Silva said. “It’s hard to tell how she’s reacting but she was definitely happy and kind of twitchy which usually means she’s trying to wiggle her excitement out.”
The family was also given a gift card to have a little dinner celebration.
“I think (Make-A-Wish) brings a lot of hope,” Silva said. “It’s emotionally difficult to constantly watch your child suffer or be uncomfortable or not know how to fix something and I know that that emotion can really chain a person, depress a person, and I know what it can do to families. I know it can sometimes tear families apart, and companies like Make-A-Wish really help brings smiles.”
Continuing until Sunday, The Wish Heroes Campaign celebrating 35 years of Make-A-Wish Idaho will be accepting donations through Wish Heroes who are tasked with raising $35 from 35 people for a grand total of $1,225. To donate or become a Wish Hero: bit.ly/3hx4ufw.
