Community comes together in support of Baby Alana

Date Published: 
June 26, 2015

Coastal Point • Submitted: Alana Rose Prettyman is facing a tough battle, but she has a community behind her.Coastal Point • Submitted: Alana Rose Prettyman is facing a tough battle, but she has a community behind her.Watching their baby girl grow weaker every day, one Ocean View couple is being lifted back up by their community.

Baby Alana Rose Prettyman was a born a bright, happy girl on Sept. 14, 2014. But several days after she turned 8 months old, in May, her parents took her to A.I. duPont Hospital for Children, and Alana was recently diagnosed with a neurodegenerative disease that is quickly robbing her of her ability to eat, smile, sit up and focus.

With that diagnosis, the life expectancy is just one year for this now-9-month old. That’s why people are taking action now, already donating thousands of dollars to the family.

Alexa Shoultes, 24, and Kyle Prettyman, 23, are responding to their daughter’s worsened diagnosis and all the community support by starting a foundation in Alana’s name.

“Our daughter has so much love — people would be blessed to experience that much love in a lifetime,” Shoultes wrote in a June 20 email. “I am so proud of the community for uniting for our sweet angel, and for us. … They are the sole source of our sparse positivity.”

Shoultes is on leave as a rehab technician and gymnastics coach, and Prettyman is taking time off from his fulltime construction work. They’re capturing every precious smile their darling girl can give them.

Alana’s original diagnosis was a form of leukodystrophy, which damages the protective covering that surrounds nerve fibers in the brain. Neurological problems form as the exposed nerve impulses slow down. Alana couldn’t keep down food, and her eye and body control were sinking.

But on June 18, DNA testing revealed the awful truth: leukodystrophy was just a side effect of the real problem.

“She has a rare [unnamed] form of variant non-ketotic hyperglycinemia,” Shoultes wrote. “Kyle and I both carry a recessive gene that caused the mutation of the BOLA3 gene.”

Alana is only the 12th patient ever diagnosed with the disorder, and doctors believe her condition’s progression is aggressive.

“It’s a neurodegenerative disease that causes … optic nerve degeneration and low tone after a period of normal development,” Shoultes wrote. “Her nerves are losing their pathways to certain muscles. Her eyes, lungs and digestive muscles are compromised, as well as her overall body strength.”

Alana’s parents are afraid of the day-to-day uncertainties, Shoultes admitted. For more than a month, they have looked forward to bringing their daughter back home.

“The prognosis is bad. Of the few children diagnosed, most don’t live past one year old,” Shoultes wrote. “They say her time is limited, and we will be sent home with hospice care until that day comes. We will remain in the hospital for another two weeks. Then we can finally go home.”

Building Alana’s legacy

“All of us that love Alexa and Alana and Kyle wanted to get together so they can spend every moment they can just on Alana, so they don’t have to worry about rent, car insurance, whatever bills they have,” said Catherine Kessell, whose own daughter was inspired by her time with gymnastics coach Shoultes.

“Alana was put here and she’s touched so many lives and so many people,” Kessell said.

“The support from the community is wonderfully overwhelming,” Shoultes said. “People who know us, people who don’t know us, people all across the states are praying and donating to our family and/or fundraisers. We have already received so much assistance, and because of that, we are able to pay our bills while spending as much time with our baby as possible.”

The family is founding a non-profit organization for Alana’s legacy. The Alana Rose Foundation will help relieve parents’ financial responsibility while they care for a sick child.

They’ll also donate to NKH research done by Dr. Johan Van Hove in Denver (Alana will be donating a blood sample and a tiny skin sample) and to the Ronald McDonald House, which provides housing to families near the hospital.

“We are excited to help families in the undetermined future. But look out for fundraisers later down the road,” Shoultes wrote.

How to get involved

Many benefits have sprung up to help support the family. People can give time, money or just a few words of kindness.

“Emotional support is worth [more than money], but give them a platform to do that securely, without having to worry about groceries,” said Willa Peoples.

• Facebook page: “Hugs for Alana” — Friends and strangers are invited to post photos, stories or inspirational words for the family to read and remember their daughter by.

“I hope one day it will bring them some comfort to read and see the outpouring of support from the community. We have gotten over 700 likes and over 2,000 shares of the page in less than a week,” Kessell said.

• Double Down at Millville Pet Stop, Saturday, June 27 — Any cash donations delivered to the Millville location will be matched by the shop. “It creates enthusiasm for a really crappy situation,” said owner Willa Peoples, who raised $1,500 at her last Double Down event.

“Yes, there is a limit to how much money I can double down,” but Peoples said she wants people to challenge her to get there. “I’ve got people behind me, and they’ll help match it.”

She can personally match the first $20 of any donation, but she promises to find a match for every dollar after that.

“If I run out of money, I’ll go out and find a way to match it,” Peoples said. “Push me to my limit, and I will go out and beg others. … We’ll find it. I hope to have that problem.

• Benefit at Summer Salts Café, Tuesday, July 7, from 7 to 11 p.m. — The night features silent auctions, raffles, a 50/50 and D.J. The restaurant is located in the Marketplace at Sea Colony. Call (302) 541-5500 for more information.

• Benefit at Scotty’s Bayside Tavern, Saturday, July 11, from 2 to 6 p.m. — The Benefit for Baby Alana is just one of many fundraisers that Scotty’s has done in West Fenwick, said organizer Robyn Ferdinand.

For just $10, guests can enjoy the buffet, and “every penny goes to the family,” Ferdinand said.

There will be a “Chinese” auction, two 50/50s and a donation jar. D.J. Cindy will keep things going all evening. Plus, there’s a cash bar with Happy Hour prices.

“It’s a great time. It’s a great cause. They’re good local people,” Ferdinand said.

To donate food or auction items, contact Robyn at (443) 614-3904. For more details, call (302) 436-1941.

• Bracelets at Hocker’s Supercenter, Saturday, July 18 — Make a donation to the family, to receive a pink “Hugs for Alana” bracelet, at a specially marked table at Hocker’s Supercenter in Clarksville. The popular bracelets sold out at a recent Mid-Coast Gymnastics event.

“Everybody loved the bracelets so much that I’m ordering more,” Kessell said.

• Fundraiser at Cripple Creek, Sunday, July 26, from 4 to 9 p.m. — Dinner, dancing and auctions are on the menu for the fundraiser hosted by Dynamic Physical Therapy of Fenwick Island.

At Cripple Creek Country Club, several local restaurants will send trays of food, besides the dinner and dessert stations. There will be a D.J. and dancing, cash bar, door prizes, live auction, raffle items, 50/50 and a wheel of gift cards.

Shoultes’s coworkers at Dynamic Physical Therapy wanted to step up for her.

“We’re very excited,” said Mary Ann DiBonaventura. “She’s family.”

The company agreed to pay all expenses, so the money raised will go straight to the family.

“Everything we collect, everything we do, is pure profit, because of the president of the company,” said DiBonaventura of Danny Bianco. “They’re good people to work for.”

Tickets cost $30 and are available by visiting Dynamic Physical Therapy of Fenwick Island, located behind Food Lion, or calling (302) 988-1586.

Donations are more than welcome and can be made by contacting Mary Ann DiBonaventura at (302) 228-9336.

• Big prize drawings — The group is seeking big-ticket items that could be raffled off. Coastal Maytag has already pledged a new washing machine and dryer set.

“We’re really looking for items to auction off, or that we can sell raffle tickets for,” Kessell said.

• Send funds directly through Wells Fargo — Donations can be submitted directly to Wells Fargo bank in Millville. Talk to any bank teller, or mail a check to “The donation account of Alana Prettyman”; c/o Wells Fargo Millville; 202 Atlantic Ave.; Millville DE 19967. Designate that account on the envelope, too.

• Send funds directly through PayPal: www.paypal.com/us/webapps/mpp/send-money-online, using email shoultes@me.com.

• Send funds directly though GoFundMe: www.gofundme.com/alanaprettyman.

“We also want to say a very huge thank-you to everyone that has reached out and supported us through this trying time,” Shoultes concluded. “Please keep praying for our family.”