‘We don’t know what’s next’: 5-year-old struggles with rare genetic disorder
by Eddie Burkhalter
Oct 25, 2013 | 3745 views |  0 comments | 57 57 recommendations | email to a friend | print
Tim Strickland helps his son Aiden with a game on the iPad at King Real Estate in Anniston Friday morning. ERA King Reality held a parking lot garage sale with all the proceeds going to help Aiden fight a rare disorder. (Anniston Star photo by Trent Penny)
Tim Strickland helps his son Aiden with a game on the iPad at King Real Estate in Anniston Friday morning. ERA King Reality held a parking lot garage sale with all the proceeds going to help Aiden fight a rare disorder. (Anniston Star photo by Trent Penny)
Wrapped in his big sister’s arms, Aiden Strickland smiled all the way down the giant inflatable slide Friday.

“Yeah, he’s pretty good. He lets me pick on him,” Kim Benefield said of her little brother, age 5.

Aiden is one of the first in the world to be diagnosed with a rare, fatal genetic condition called ubiquitin disorder, said his father, Tim Strickland.

Benefield’s workplace, ERA King Real Estate in Anniston, held a fundraiser for Aiden on Friday, with a bouncy-house and a slide. Money raised will go to help the Huntsville family pay for his costly treatments.

Strickland, 55, said there is no cure for his son. Doctors only recently put a name to what is slowly taking away Aiden’s muscle control.

He’ll always be able to see, hear and smell, but the condition could take away his ability to breathe and swallow independently, Strickland said.

It’s a degenerative condition that has already taken the lives of at least five in Aiden’s biological family, Strickland said.

Tim and Loretta Strickland adopted Aiden at age 3 from his biological mother. The Stricklands had been caring for him since he was 3 months old, working for a time to help his teenaged parents so that Aiden could go back to live with them.

Aiden’s biological mother began having symptoms of the same condition in 2010, Strickland said. It was clear she would not be able to care for him, he said, so she agreed to sign the adoption papers. She’s now 24 and being cared for in a nursing home.

Aiden’s grandmother died in her early 30s with similar symptoms, as did his great-grandmother in her 50s, Strickland said. Two of Aiden’s great uncles died at 7 and 5-years-old, both with the same symptoms, he said.

“His family had three or four different diagnosis over the decades,” Strickland said. “They had basically given up on trying to get a diagnosis.”

First signs

Aiden was playing T-ball for the Hampton Cove Braves in May.

“He could hit and throw and catch like you wouldn’t believe,” Strickland said.

Then Aiden began having trouble with his right hand. Toward the end of May, he began losing his balance, and by mid-June he was unable to walk, Strickland said.

He has difficulty holding his head up now, his muscles unable to receive messages from his brain because of spent protein that builds up in his neurological cells blocking pathways, Strickland said.

“There’s no set pattern that this follows. We don’t know what’s next,” Strickland said.

Aiden may also lose the ability to breathe and swallow on his own, his father said. He could end up bedridden.

The family sought help from specialists in Huntsville, where Strickland lives and owns an advertising agency.

DNA samples were collected from Aiden’s biological family, and his doctors collaborated with the genetics lab at Harvard University for answers, Strickland said.

After four months of testing, Strickland said the family got an answer. Doctors had always thought the condition was related to Amyotrophic lateral sclerosis or ALS, which has similar effects on muscle control, Strickland said, but after studying those DNA samples it’s been classified as its own disorder.

Attempts to reach doctors responsible for Aiden’s care Friday were unsuccessful.

There are no support groups for ubiquitin disorder.

“I’m sure there are other people out there with this, but they just don’t know it,” Strickland said.

The prognosis is hard to know, he said, but “based on family history he may have another five years.”

A wish come true

Aiden and his parents will be in the stands of Bryant-Denny Stadium today to watch the University of Alabama football team play Tennessee. The trip was made possible by Magic Moments, an Alabama nonprofit that grants wishes to chronically-ill or special-needs children.

Kaitlyn Bitz, statewide coordinator for Magic Moments, said Aiden was chosen to take part in the program because of his genetic disorder. Dr. Drew Davis at the Children’s Hospital of Birmingham and Dr. Martina Bebin at North Alabama Children’s Specialists in Huntsville placed Aiden’s name on Magic Moment’s list, Strickland said.

He met the Crimson Tide football team in August, and got to sit in coach Nick Saban’s chair and wear his hat. Aiden watched as players came out of the dressing room after practice.

“They signed a ball,” Aiden said, iPad in hand, smiling widely after making a new friend named Dalton, a boy about his age.

The two sat together on a beanbag chair Friday during the fundraiser, trying to find the game Minecraft hidden somewhere on the device.

“I went in the coach’s office and saw his helmet, and the rings,” Aiden said. He recalled seeing a very special football made of crystal as well.

“Remember when we saw it on TV, Dad?” he asked his father.

Aiden listens carefully while on doctor’s visits, and he knows what’s happening to him, Strickland said, but he doesn’t dwell on it.

“Not once has he ever asked why,” said Benefield, his sister.

He’s enrolled in kindergarten at Goldsmith-Schiffman Elementary in Huntsville, but is currently studying at home. As soon as Aiden’s motorized wheelchair is modified, he’ll be going to school with his classmates.

Stem cell treatments may help Aiden, Strickland said. The family is raising money to help pay for the $40,000 treatment, which will have to be done over five sessions in Mexico, he said.

“If we can at least stop it, or maybe reverse it a little bit, then as technology moves forward maybe they’ll be something that can cure it, or at least give him a good long life,” Strickland said.

The Stricklands’ other children are all nearly grown. They’ve got three grandchildren now, all older than Aiden. They hadn’t planned to have more children, he said, but now they’d have it no other way.

“This was one of those things that happened, and all of the twists and turns that went along with it, this is what was meant to be,” Strickland said. “He’s a good little boy. He’s the best little boy.”

To make a donation or learn more about Adien, visit www.aidenspath.com or www.facebook/prayingforaiden.

Staff writer Eddie Burkhalter: 256-235-3563. On Twitter @Burkhalter_Star.

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