KINSTON, N.C. (WNCT) – Ronin is a happy go lucky little boy with SDS also known as Shwachman-Diamond Syndrome.
“I googled it a lot, and checked everything on it. It wasn’t the best thing to do. You learn a lot and there are a lot of different variables that can happen to a child with Shwachman-Diamond so when you read it you assume they have everything,” said Anthony Porrata.
His parents Anthony and Maria Porrata were like any other parents when they found out. They were worried. In fact, they moved to North Carolina from New York for the top of the line medical care for their son.
“Thankfully when he has to go in for fever protocol we call it, we trade off and alternate turns. Sometimes I go with him and sometime my husband goes and one keeps our older daughter,” Maria Porrata said.
The Porratas say Ronin visits duke about once a month. Whenever he has a high temperature, it’s off they go.
“Anything bacterial can be fatal so that’s part of the reason why anytime he gets a fever we go to the hospital,” said Maria Porrata.
SDS affects many parts of the body primarily the bone marrow, pancreas, and skeletal system. Children with the disease are often shorter than average and have a difficult time digesting and absorbing nutrients.
Maria Porrata said, “He’s the size of a five or sixth month old, but he’s two years old.”
With no cure for Ronin’s disease, the family says annual screenings help them detect how he’s doing. They say there is a possibility little Ronin may need a bone marrow in the future. With the help of community members, he may find a donor.
“Ultimately it would be great to find a match for him just in case of the event if he does need it, hopefully they find a cure and he never needs it,” explained Anthony Porrata.
On New Year’s Eve, an event in Kinston will offer free mouth swaps for a bone marrow matches. The family says their forever grateful for community members who turned into friends and helping their child.
The event will be held on Thursday December 31, 2015 at the Kinston Performing Arts Center. For more information, call 252-550-1872.
If you are unable to attend the event, you can still help. Anyone between the ages of 18 to 44 can click here and register. A swab kit will be sent to your home. After completing it and sending it back, your name will go on a list to help those in need of bone marrow.