KANSAS - Mark and Angie McGinnis
of Kansas have two beautiful children, Eva, 3½ and Zach, 11 months.
"Eva and Zach can't break down mannose, which are little sugar molecules," explained Angie
, their mother."They build up in your different cells and they can't be recycled."The disease is so rare that there are only about 200 known cases of it worldwide."If affects your bones, your skeletal system," said Angie
...Angie works at Owens Community College in Findlay.
"Eva's one hearing aid cost $2,500," said Angie
."Our insurance doesn't cover hearing aids."They did receive help from a few community sources, but they still had to pay for much of it themselves."Eva also has arch supports for her
shoes because she
has really flat feet," Angie
said.These were not covered by insurance either, though Eva's podiatrist assured the McGinnis's that she
should have them.
"Our family and friends have taken the initiative to do all these fund raisers," explained Angie
."I mean we've never asked anybody to do anything.They just kind of took it upon themselves to organize."The McGinnises have seen a great out pouring of community support from everywhere."Our church sent us cards when Eva was in the hospital," said Angie
."We had a letter that we got in the mail that had a couple hundred dollars in it.It didn't even have a return address."There are people out there that are doing things for us that we don't even know."Angie
and Mark are very thankful for all of the help that they have been receiving.
"Just knowing that people are thinking about you and that people are praying for you," said Angie
, "and that they're doing whatever they can to make our lives a little bit easier helps."The Nyes came to them last year to ask if it would be okay to host a benefit for Eva.Now this year the Nyes are hosting another one for Zach.They are not the only ones who have held benefits either.There have been people from the church, Mark's family, and people from Mark's work have also hosted benefits to help with the extra costs."The fund-raiser money will definitely help us out with expenses," said Angie
.While Zach and Eva are suspectible to germs they do still go outside to play and Eva goes to restaurants and the store."The main thing is to stay away from large crowds of people, in confined areas," explained Angie
.While many things have been hard for the McGinnis's, their world is looking up now.They are currently planning Zach's first birthday party.They have to play it by ear to see who can come, but at least he's
not in the hospital as they thought he