Heartbreaking and heartwarming: Community unites in support of Alana, family

17 ALANA baby alana with alexa

Alexalynn Shoultes and her 9-month-old daughter Alana Prettyman share a laugh at A.I. duPont Hospital for Children.

DAGSBORO – Baby Alana’s smile can easily melt your heart.

Her medical diagnosis will likely break it.

Unknown, uncertainty and a sense of hopelessness has hit home for a Dagsboro couple – Alexalynn Shoultes and Kyle Prettyman – and their precious little girl, 9-month-old Alana Prettyman.

Since she became suddenly ill May 19, little Alana has been at A.I. duPont Hospital for Children in Wilmington, undergoing a battery of tests.

17 ALANA baby alana laughing

The diagnosis: a form of Leukodystrophy, a demyelinating disorder of the brain that will severely impact – and shorten – Alana’s life.

“It is more along the shorter span, probably two years,” said Ms. Shoultes.

In medical terminology, Leukodystrophy is a breakdown of a component of the nervous system called the myelin, characterized by degeneration of the white matter in the brain.

At present there is no cure. Only hope – for a miracle.

Continuous loss of motor/muscle function means – barring that miracle – Alana will never ever crawl, walk or talk.

Bottle feeding presents fear of aspiration, her mother said. Alana’s muscles have weakened to the point is difficult to swallow food, use her pacifier and smile and laugh.

“It is painful to watch,” said Ms. Shoultes. “She is so miserable; so uncomfortable.”

There is also the financial burden as Alana will require extensive care as she returns home.

Ms. Shoultes is on family/medical leave of absence from her position as a rehabilitation technician at Dynamic Physical Therapy in the West Fenwick Shopping Center as well as her coaching position at Mid-Coast Gymnastics Studio in Selbyville.

Mr. Prettyman is taking time off from his fulltime construction work.

Friends, co-workers and scores of others also feel the pain. So a caring community is rallying in support, doing what it can.

Alexa’s “family” at Dynamic Physical Therapy is hosting a fundraiser at Cripple Creek Country Club in Dagsboro Sunday July 26, from 4 p.m. to 9 p.m.

The event will include food and refreshments, dancing, a silent auction, door prizes, raffles and a cash bar.

Dynamic PT is also selling “ xo Hugs for Baby Alana xo” bracelets – designed by 10-year-old Mya McDonald, one of Ms. Shoultes’ former gymnastic students at Mid-Coast Gymnastics Studio where Alexa is a beloved coach.

17 ALANA Gymnasts at recital

Mid-Coast Gymnastic’s bronze gymnastics team shows their support for their coach, Alexa Shoultes, whose baby girl has a serious medical disorder, during Mid-Coast’s 20th anniversary recital Saturday night at Indian River School School. Ms. Shoultes’ baby girl, 9-month-old Alana Prettyman has a degenerative brain disorder. The gymnasts sold baked goods and wore their Hugs for Baby Alana bracelets. From left to right, Madison Tipton, Hannah Morris, Mya Macdonald, Bella Scharp, Cydney Derry, Lisa Cave, Olivia Folliard, Jordan Gonzalez (on floor).

Bake sale proceeds from the Mid-Coast’s 20th anniversary recital June 13 at Indian River High School were donated to the family. The Mid-Coast Gymnastics family is making posters, selling bracelets and undertaking other fundraising ideas.

“Alexa has got a lot of kids and she has encouraged them and supported them. She has been their coach for years,” said Dagsboro resident Megan McDonald, Mya’s mom who is a physical therapist at Dynamic PT. “So this was all very devastating to them. They were so excited when she had her baby. As excited as they were when she had her baby, this has just been devastating to the little girls as well.”

“It is absolutely inspiring to see all the efforts that these young girls are doing. The parents – every time you turn around they are coming up with donation items or raffle ideas, and also working on those and taking a very active role in trying to help coach Alexa as they transition back home,” Ms. McDonald said. “Alexa has got a great work family that really supports her. She also has a lot of little girls that want to do anything that they can do to help as well.”

On the social media/web front, Ms. Shoultes’ friend, Emily McEvoy of Rehoboth, established a GoFundMe “Prayers for Alana Prettyman” site – http://www.gofundme.com/alanaprettyman – that through June 13 had raised $6,000 in donations.

“We thank you from the bottom of our hearts,” said Ms. Shoultes. “I’ll never be able to give everybody the thanks they deserve.”

“I am in awe of how much the community has come together,” said Christy Weber, Ms. Shoultes’ co-worker at Dynamic Physical Therapy. “Alexa came to join our company last year when she was pregnant with her little one … so we saw her through all of her pregnancy and she gave birth to this little girl back in September.”

“All of our offices are kind of getting together so once she comes home they are going to take turns cooking her meals,” said Ms. Weber. “What has been fantastic is that a lot of our patients here who have gotten to know her over the last year have really reached out. We had somebody that went up and hung out like the entire day … for lunch.”

That family connection abounds at Mid-Coast Gymnastics.

“Alexa has got a fleet of kids like 12 and under that just adore her. They are pitching in – buying bracelets and selling them to all of their friends, raising money for their coach – Alexa,” Ms. Weber said. “We are all heartbroken and doing whatever we can to help her out. It’s heartbreaking but it’s also heartwarming to see how the community is rallying behind her and really trying to help them out.”

17 ALANA baby alana mom dad

Parents Kyle Prettyman, Alexalynn Shoultes and daughter Alana.

This gut-wrenching story began when Alana experienced eye twitching when she was about four months old.

“We got that looked at. They said come back in six months to check the progress because nine times out of 10 the MRI comes back with no abnormalities,” said Ms. Shoultes.

Right after Alana turned 8 months old her mom thought she was showing signs of teething. “

“She was refusing to eat. She was fussy. Then she started getting crankier; she has always been a really happy baby. So it was kind of weird,” said Ms. Shoultes. “Then she started getting less and less body control. That progressed rapidly.”

No longer could Alana sit up by herself.

“She had nothing; she was limp – completely limp,” said Ms. Shoultes.

Following tests at Beebe Healthcare, Alana was sent to A.I. duPont. Alana’s parents followed her and have almost continuously been at her side.

A spinal tap, a muscle biopsy (g tube placement) and more tests are in Alana’s future.

“It is just so hard,” said Ms. Shoultes. “There is nothing we did. There is nothing we could have done and there is nothing we can do about this. It is just watching her decrease every day.”

“If you think about a kid and an adult getting paralyzed, the adult has more muscle tone to live off of, whereas a kid doesn’t. And Alana is only eight months old, so she doesn’t even have the muscles that it takes to crawl. So there is not much to take from her,” Ms. Shoultes said. “She has already lost so much that it is hard to think of what else it could take from her …”

Even a brief time away to try and have a good time can be difficult.

“We were at a festival – the Italian festival they have here in Wilmington – and I was looking at a little kid dancing with their mom. And it broke me down. I had to leave that area,” said Ms. Shoultes.

Social media has ushered Alana’s story around the globe. A radio station out in Wisconsin asked for prayers for Baby Alana.

17 ALANA baby alana closeup smiling

A caring community is rallying in support of 9-month-old Alana Prettyman, who has a degenerative brain disorder.

“I can’t even begin to express the gratitude that we have for everybody that has been doing everything. I mean, sharing the video that she has on You Tube has been seen around the world,” Ms. Shoultes said. “I didn’t expect any of this. What the community has done – I don’t even have words for it. I think as far as the community goes, it has brought everybody together; it has brought everybody closer, trying to wish for the same – a miracle for my baby …”

“This is a young family that needs some help,” Ms. McDonald said. “It is so heartbreaking but it is so amazing to see the prayers and love and the support and everybody really praying for a miracle.”

Dynamic PT fundraiser

Tickets for the July 26 at Cripple Creek CC are $30 and can be purchased at Dynamic Physical Therapy of Fenwick Island.

Through the generosity of the Dynamic Physical Therapy President Danny Bianco and senior management, all incurred fundraiser and food expenses have been paid so that all other donations and moneys earned from the event will be a total profit for this family.

“The whole company is very family oriented,” said Maryann DiBonaventura, Regional Manager at Dynamic. “This has taken a piece of everybody’s heart. Alexa is part of our family and when you feel helpless, that’s all we can do is come together.”

Gift cards/auction items as donations are welcome and deeply appreciated. Those making donations are asked to include business cards so that this generosity can be shared with the community. Call Ms. DiBonaventura at 302-988-1586 to arrange for pick up.

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