Newton Grove girl, 6, awaits 3rd small-bowel transplant

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Addyson Lockwood

Addyson Lockwood, Addy for short, is like a lot of 6-year-old girls. She smiles sweetly upon hearing how pretty she looks in her ruffled Christmas dress. She'll enthusiastically show you how she's learned to play a variety of games on her mom's tablet, and she's excited about an upcoming trip to see Disney on Ice.

But one thing that sets her apart from her young peers is the black backpack.

It is connected to her.

It's a necessity for Addy because she is dependent upon IVs for all of her food, and she has tubes connected to her stomach and side to drain the waste and bile, serving as a replacement for her small intestines.

Born With Rare Condition, Leads to Two Transplants

As Addy's mom, Tara Knowles, puts it, her young daughter has been through more surgeries and procedures in six years than they can count. It all started when she was born with a condition called Gastroschisis, which is a birth defect of the abdominal wall. In these rare cases the child's intestines stick outside of their body, through a hole.

As Debra Sudan, MD, Duke's Division Chief for Abdominal Transplants and Addy's doctor explains, this caused a portion of her intestines to die, and she soon found herself needing a new bowel, liver and pancreas. She got the initial transplant, but her tiny body rejected it. Then, in July 2012 she had a second transplant, and this time it worked.

"It went fantastic, everything was great, she was home within a month," Knowles recalled. That lasted for four years, allowing the young girl to eat, drink, and play normally. Life was going great for the family, up until this July when she suddenly became very sick, and it was discovered that Addy had a blood clot that had caused her organs to fail. And now, she's back on the transplant list, yet again.

Addy's New Normal

"Now she's not allowed to eat or anything. She has IVs that give her all her nutrients and everything. At first it was horrible, it was the worst thing in her life, she thought, because she couldn't eat. She was so used to it," Knowles said. And, adding insult to injury, because of her condition and the constant trips each week to the clinic at Duke, Addy was unable to start kindergarten this year, something she'd been really looking forward to.

"At first it was very hard," Knowles said. "But now she's gotten to where I tell her 'we can't do this, but when your belly is better....' So, now she looks forward to when her belly gets better, she can go and do this and do that."

As for when a suitable transplant might come along, it's a waiting game, and there's no telling when that might happen. Still, despite this being her third attempt, Sudan feels she is a good candidate for the procedure.

"Really, if she weren't so healthy and well, typically we wouldn't even consider re-transplanting at this stage, because she had lost the two prior. But, I think there is a reasonable likelihood we can be successful. And she's so healthy, it's hard to imagine not getting her that opportunity," Sudan said.

Despite the rarity of her condition and the blood clot she suffered, Addy is lucky that she's here in North Carolina. Duke is one of a handful of hospitals that can perform a bowel transplant, and Sudan is at the top of the list of qualified surgeons. She estimates maybe only 2,000 to 3,000 have been performed worldwide, and she's done about 135 of them, with the procedure itself being relatively new.

Struggling to Afford Treatment

Still, Addy lives over an hour away in Newton Grove, and on top of the weekly trips, the gas money involved and the mounting medical bills, Knowles is only able to work part-time at her job as a cook for a nursing home because she has to dedicate so much time to caring for Addy.

"Luckily my job's only five miles from my house, so I'm running back-and-forth throughout the day to unhook (her IV's) and hook everything back up. I could only work two to three days a week, and it's not much, but I get by with what I can. I do the best I can," Knowles shrugged with a small smile.

The family does have a GoFundMe page set up, although so far they've raised less than $200. Though helping paying their bills would be nice, the greatest gift Knowles says she could receive would be word that Addy was a match for a new set of organs, giving her a chance at a new lease on life.

"I would do anything for my baby to make sure she's happy, healthy, and lives the most normal life she can," Knowles said.

Want to offer encouragement or help financially? Follow Addy's progress on Facebook or donate to her GoFundMe account.

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