Community rallies to help Orange Beach family

More than $28K raised for family of OB kindergartener with rare illness

By: Crystal Cole/ Islander Editor
Posted 12/3/18

Orange Beach residents, along with people all across the country, are coming to the aid of a family whose daughter has an extremely rare health condition. In late September, Annadelle Faulkner came …

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Community rallies to help Orange Beach family

More than $28K raised for family of OB kindergartener with rare illness

Posted

Orange Beach residents, along with people all across the country, are coming to the aid of a family whose daughter has an extremely rare health condition. In late September, Annadelle Faulkner came home from a day in kindergarten at Orange Beach Elementary School running a fever and not feeling well. After seeing several doctors and not seeing any improvements, parents Neeli and Chris took their baby girl to Mobile’s Children’s Clinic.

An MRI revealed that she has an extremely rare illness called transverse myelitis, which inflames the spinal cord and interferes with messages sent from the brain to her limbs. However, further testing has confirmed a diagnosis of acute flaccid myelitis (AFM). Her breathing has gotten better; however, she is still receiving treatments from the respiratory therapist. As of now her treatment plans include steroids until the cause of the illness has been determined. A recent spinal tap will reveal the cause. Her team of doctors expect a hospital stay ranging from weeks to possibly months.

Neeli said little is known regarding causes or treatments of her daughter’s condition.

“Recovery rates of victims differ significantly- some patients make a full recovery while others may not recover at all,” Neeli said. “We are believing in God to heal Annadelle completely, as we know He will use our story as a testimony to many others.”

According to the CDC, most patients with AFM had onset between August and October, with increases in cases every two years since 2014. Annadelle’s is the first confirmed case in the state of Alabama with other possible cases being examined. Most (more than 90 percent) cases of AFM are children. AFM remains rare (less than one to two in a million people), even with the recent increase in cases.

Neeli has been chronicling her daughter’s journey through this illness on her blog, www.annadelleyeah.com. In a recent post, she said Annadelle has made slow progress in physical therapy and occupational therapy as of late.

“She is now moving all of her limbs at least a little bit, but she is still unable to move her left foot,” Neeli said. “She can wiggle two of her toes on that foot, but there is no action at the ankle or for ‘pull up’ and ‘pedal down.’”

Neeli talks about visits from family and friends who give a welcome change of pace to hospital life and bring tidings of home cooking. The reality is long hospital stays are grueling work, and costly to boot. The family was blessed with a GoFundMe page set up by a friend to help cover medical costs and bills during this difficult time. So far, $28,480 has been raised for the Faulkner family with more than a third of that coming from a single donor.

Annadelle’s doctors say she might be going home soon, but the work with PT and OT will be an ongoing process.

While AFM is not contagious from person to person, the viruses believed to cause it are. Viruses associated with AFM include poliovirus, enterovirus A71 and West Nile virus. The CDC recommends making sure you are up to date on polio vaccinations, washing your hands frequently and protecting yourself against mosquito bites in an effort to guard against AFM.

While Neeli has been sharing the ups of Annadelle’s recovery, a recent post reminded people that they are not out of the woods yet.

“She can’t hold a cup with 12 ounces of liquid,” Neeli said. “She can’t lay herself down or sit herself up on her own. She can’t brush her hair or put her socks and shoes on. She can’t crawl or even roll over without help. She can’t do 90 percent of what she once could.”

The worn-out mom is taking time to appreciate the little things now, the things she once took for granted.

“Snuggles with my baby girl are so much more meaningful now,” Neeli said. “I spend much less time on my phone. I’m more patient. I try to understand ‘the other side’ and am more sympathetic than I once was. I literally stop to smell the roses.”

If you wish to donate to the Faulkner family, visit www.gofundme.com/fund-for-princess-annadelle.