Families gather in Sulphur for Alfi's Syndrome family reunion - KPLC 7 News, Lake Charles, Louisiana

Families gather in Sulphur for Alfi's Syndrome family reunion

(Source :Maranda Whittington/KPLC) (Source :Maranda Whittington/KPLC)
SULPHUR, LA (KPLC) -

Saturday was a learning experience for parents of children with Alfi's Syndrome

Families from all over the world traveled to Sulphur for the "9pminus" family reunion. 

The family reunion held a roundtable discussion for parents, and a presentation from the network's genetic counsel. 

Even with all of the educational resources, families say one of the best parts of the reunion is getting to spend time together and share stories with each other. 

"The children are just so warm, and their parents are just...it's just good to hear their stories that are similar to our story, and to be able to share," said parent Jenny Webb. 

Webb and her family traveled all the way from New Zealand to attend this year's reunion. 

"We've always wanted to come over here and meet with the group and network, so it's taken 20 years but we're here now," said Webb's husband Murray. 

Kristen and Nathan Nazworth are the host family for this year's family reunion and are excited to have so many families from all over visiting. 

"It's just so encouraging to meet other parents and know that we're not alone, and we're not going through all these questionable things alone," said Kristen Nazworth. "There are other people going right along with us and it's just encouraging to be able to talk to them and hear that your child is doing the same things theirs are." 

Sunday will be the final day for this year's event. 

The next family reunion won't happen again until 2020. 

Copyright 2017 KPLC. All rights reserved.

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