A ‘2 in 2 million’ connection on a difficult journey with a very rare disorder

2 girls find friendship in shared diagnosis

2 girls find friendship in shared diagnosis

Doctors say the chance of a diagnosis is one in 1,000,000.

It’s called Alpha-mannosidosis and two families, far from home, are in Minnesota so their daughters can receive care for the rare disorder — daughters who quickly became friends.

“It’s just been so sweet,” Abby Melone, mother of four-year-old Layla, said about their friendship.

“It was like an immediate click, like [an] immediate bond,” Elise Faulk, mother of five-year-old Kate, added.

Layla and Kate both have Alpha-mannosidosis — it’s caused by a mutation in a gene that produces enzymes and can affect the muscles, hearing and the brain.

Courtesy of the Melone family

“There are about four million kids born in the U.S. a year, so there are four kids with these diagnoses born in the U.S. a year,” Dr. Paul Orchard, a blood and marrow transplant physician with M Health Fairview Masonic Children’s Hospital, said.

And because it’s so rare, both families started on their journeys feeling like it’s a road they’ll travel on without much support.

“While our families love us very much, and they’ve all been very supportive, and friends who’ve really [supported] in such unique ways to help us out, they’ll never fully understand what we have gone through,” Melone said.

But, thanks to social media the families connected — quickly strengthening that support.

“They reached out to us and [said] ‘Okay, we have this situation right now, we just found out, can you please guide us,’ and the thing that we both said to them was basically ‘Don’t think too much about it, we’ve done it just come here,’” Chris Melone, Layla’s father, said about how the Faulks should come to Minnesota for care, specifically to Masonic Children’s Hospital.

The Faulks are from Louisiana and the Melones are from Florida, but will be heading home soon as Layla is recovering well from the chemotherapy and bone marrow transplant she received to treat her disorder. Kate’s transplant day is set for the end of August.

“You’re a new city in a different environment and your kid’s sick in the hospital, and it’s an extremely difficult process to go through,” Dr. Orchard said about this type of care.

From the staff at the hospital, hospitality at the Ronald McDonald House, and new friendship, the Faulks are feeling comfortable and confident with what lies ahead.

“She has someone to look at to know what she’s going to go through,” Faulk said about her daughter.