Coraline’s wish comes true

PALMER — Coraline Sanders still smiles. She loves to give kisses, she loves to laugh, and most of all she loves music. Coraline is nearly blind but her hearing is heightened. She has a special relationship with sound and especially with music. It uplifts her and it soothes her.

She sings throughout the day and settles down when her favorite tunes start playing. She sings along to Disney movies and cannot sleep without the steady stream of Ed Sheeran, her all time favorite, at her side.

“She’s all about sound,” said Coraline’s mother, Kayla Baker.

Coraline has infantile Leukodystrophy, a rare and terminal brain disease that is deteriorating her white matter. She is 2 years old but is essentially toddler-sized infant. She was diagnosed at 9 months old and has since lived almost two years past expectations. At the initial diagnosis, doctors gave Coraline a year to live. According to Baker, Coralline is currently the longest living child of her age range and three similarly aged children died in the recent months. Her disease is very rare. Baker said that one in 400,000 people are diagnosed with it and there’s currently only 250 cases worldwide. Coraline is the only case in Alaska. Coraline’s parents noticed her symptoms when she was 6 months old.

“She went from sitting on her own to trying to crawl to not being able to keep her head up any longer,” Baker said. “She just went stiff and couldn’t move much of her body. That’s when they diagnosed her with Leukodystrophy.”

The white matter in Coraline’s brain is disappearing. She is stationary and has a limited ability to move. She has lost the ability to eat on her own so she has a feeding tube. She also needs the help of a catheter. She is able to move a bit and likes to flail, slap and tug at things.

“She’s pretty good at grabbing her tube,” said Coraline’s father, David Sanders. “She thinks it’s funny.”

Coraline has had pneumonia six times and is taking five different medications like Valium, Gabapentin, and Baclofen. She has to switch medications frequently because she grows immune to them. Baker said that her daughter is actually in an upswing and faring pretty well.

“She’s always happy,” Baker said. “She’s a special girl. Everybody that meets her just falls in love with her. She kisses people. She just loves the attention pretty much.”

Coraline’s brother, Elijah is year and a half old and is always jovially running around the house. Baker said he is a caring brother and learned to be very gentle with his sister. He will cuddle her and pet her and even gave her an armature pedicure with a marker one time.

Baker was five months pregnant when Coraline was diagnosed. She was also told that every one of her children has a 25 percent chance of acquiring the same disease. She said that didn’t make her pregnancy any easier.

It’s been a tough journey for Coraline and her family. On top of their medical concerns has been theft and displacement. At the end of May, their car was stolen. Baker said that her parents actually found them and followed them through Wasilla until the troopers caught up with them but it was too late; the criminals had totaled the car.

A week before, Coraline was was vomiting 15 times a day. She was hospitalized for pneumonia, which caused David to lose more hours at work. Due to the money spent over the theft ordeal and time lost from work, the family couldn’t make their house payment so they were evicted and had to move in with Baker’s family in Palmer.

Baker said she is actually glad everything happened the way it did because after losing her car and home, they moved in with her parents, which has proven to be very helpful for their situation.

“Being down here makes everything better. She gets to be with family all the time,” Baker said. “We just try and keep positive and stay together. We just try to help her have the most amazing life, as she should.”

The family has been making the most of their time with Coraline and taking each day as it comes. Baker is a stay-at-home mom and Sanders works as a mechanic at Yukon Services in Wasilla.

Recently, Baker noticed Coraline was having difficulty breathing and that her heart was racing. She took her to her doctor. The doctor said that it looked like her brain was sending the wrong signals so she couldn’t control her breathing.

“They think that’s what’s going to happen,” Baker said. “Her brain is just going to stop telling her how to do things.”

Baker said it can be tough at times because there’s so many things Coraline can’t do. But she still is able to see the light in the situation, the abundance of quality time she gets to spend with her daughter — the bounties of bonding.

“There’s so many kids that are her age I see running around — it kills me — but at the same time, she get’s a whole new perspective,” Baker said. “She is cuddling all the time she sings all the time. She is like a little newborn that never grows up. She just gets bigger.”

Recently, the Make-A-Wish Foundation helped Coraline meet her all time favorite singer, Ed Sheeran. They flew down and saw his concert in Phoenix. The family went backstage where Sheeran held Coraline and sang songs like “Photograph” to her.

Coraline is all about sound and all about bonding.

“She also has a pretty good memory, too,” Sanders said. “She can remember voices. If you just walk towards her she knows who it is just by the sound.”

The family’s only working vehicle is broken down. Baker and her friend have started a Go Fund Me page to get new family van.

“We don’t know how long she has. She’s hitting almost two years past what they thought. She’s fought her way past little issues here and there. She’s a tough little girl,” Baker said. “Everyone who meets her falls in love with her. She has opened so many eyes.”

Find the fundraising page at https://www.gofundme.com/coraline039s-cause