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Community rallies around infant with rare disorder

BY BROOKE R. CANTRELLE

L’OBSERVATEUR

 

INFANT: Anniston will need a multi-organ transplant

 

RESERVE — Nine-month old Anniston Cancienne was born with MMIHS, a rare disorder that impacts the gastrointestinal system and leaves him unable eat and absorb nutrients as an average person would. While it is heartbreaking for parents Tricia and Darren Cancienne to see Anniston unable to reach the same feeding milestones as his twin brother, it gives them hope to see the community coming together to shower their baby boy with love.

Riverlands Golf and Country Club recently hosted a November Craft Show and Give Back Event and donated the registration fees from 32 vendors to the Cancienne family. This raised more than $1,000 for medical expenses.

Leah Williams and Emalyn Arnett, two young girls from LaPlace, are using their company L&E earrings to raise money for Baby Anniston. A portion of profits from their handmade jewelry sales will help support his medical journey.

“They could definitely earn extra money and spend it on whatever they want. They chose Anniston, so it’s really touching,” Anniston’s mother, Tricia Cancienne, said. “This is what community and service is all about. Their parents Adam and Michelle Williams and Willie and Kelly Arnett are teaching their girls the importance of service and helping those in need. This warms our heart to see so many of our family and friends as well as their children rallying around Anniston.”

The Cancienne family also commented on what it meant to them to be the recipient of the Riverlands Golf and Country Club November Craft Show and Give Back Event.

“Growing up in the River Parishes, we’ve had different times when we’ve seen other kids who need help. I’ve always tried to help kids, but of course when you’re on this side of it, it’s extremely humbling,” Tricia Cancienne said. “I don’t think anybody really realizes how much it means to give from your heart, not just with money but with time. Everyone who supported the vendors essentially supported Anniston.”

It is important to the Cancienne family to raise awareness of MMIHS, especially since Anniston looks like a typical healthy baby from the outside.

Without smooth muscle function, Anniston lacks the gastrointestinal motility to push food through his digestive system. He requires 24-hour care and has a central line to take in critical vitamins and minerals through his belly. At nine months old, Anniston wants to flip, crawl and move around, which isn’t always easy with tubes and machines attached to his body.

Anniston is on medicine that is time sensitive, meaning is family’s daily schedule is always based around the clock.

“Anniston is on TPN (total parenteral nutrition), which is not something he can live on forever because it eventually ruins the liver,” Cancienne said. “Anniston will need an intestinal transplant that includes his colon. Because what he has is extremely rare, no surgeries are available in Louisiana. He would have to go to Omaha or Pittsburg for six to nine months. It is really scary for us because there isn’t a lot of information out there.”

Another concern is that the TPN line leaves Anniston very susceptible to infection. It has been a challenge keeping Anniston caught up with early intervention therapies while also minimizing his risk for contracting an infection.

“My heart breaks because we have another son, and we still need to celebrate those things he’s doing and not minimize them. When you have Anniston who is becoming aware of what’s going on, it hurts,” Cancienne said.

“As much heartache as we have on a daily basis, our hearts are also full when we see the community coming together.”

Lindsey Vicknair, swim instructor at Riverlands Golf and Country Club, said this was the first year the annual craft show had a broader purpose to give back to the community. The inspiration came from a smaller give back event for the Cancienne family held earlier in the fall. The initial event had a nice turnout and approximately eight vendors, but many in the community were unable to make it and wanted another way to help the family.

The Fall Craft Show, held on Nov. 7, was an outdoor event to encourage social distancing. The event offered family friendly fun, and Vicknair is grateful to the St. John Parish Fire Department and Sheriff’s Office representatives who brought their vehicles out for the kids.

The Blood Center was onsite to collect donations. Vicknair said the blood donation goal was reached by the end of the event.

“It was a huge success. It ended up being a beautiful day, and we’re very excited. We had 31 vendors show up. A 32nd vendor had to drop out at the last minute, but they still wanted to pay their vendor fee and support the Cancienne family,” Vicknair said.

Riverlands Golf and Country Club will have more give back events forthcoming.

“Please follow the Riverlands Facebook page. We have a few other events up our sleeve,” Vicknair said.