CARIBOU, Maine (NEWS CENTER) -- Cindy and Christian Johnson know all about the financial and emotional stress having a child with a life threatening illness can cause. Their son Kaleb was diagnosed with neurofibromatosis type one, a disease which causes tumors to grow on nerves, when he was just nine months old.
"Initially you are really lost," explained Christian Johnson. "You are really in an open sea. You are being hit with emotional struggles, financial struggles, time struggles, and ultimately there are feelings of guilt that come along with that."
Doctors told the family that Kaleb would be lucky to live to see age four.
"You just do your best to carry on and carry your family through with you," said Cindy Johnson. "It is hard on the siblings. It is hard on extended family members. People feel very helpless, very hopeless. You just have to pull together."
The Johnsons say members of their family, and the community in general, helped support them - watching their other young children while Kaleb was in hospitals receiving experimental treatments to control his incurable illness, or doing other things to help them get by.
The family was also given a great gift by the Make-A-Wish Foundation, a trip to Florida for the entire family so Kaleb could meet his favorite cartoon character, Scooby Doo.
"The opportunity to be distracted from every day life when you are dealing with a life threatening illness is great," said Christian.
The family says love, prayers and community support, not to mention Kaleb's strength to over come his illness, has allowed him to defy the odds and see his 12th birthday. He still requires a lot of medical attention, but goes to school and helps out around the house.
As a way to show their appreciation, and try and payback the people who have helped them get this far, the Johnsons recently opened a thrift store in downtown Caribou. The store's profits will be given to other families struggling to make ends meet and care for their own sick children.
"The shop is all donation based," explained Cindy. "We accept furniture, clothing, appliances, and the like - everything but the kitchen sink. This is our one opportunity to give back to the community because we have been there and experienced it and it gives us tremendous joy to do this."
The store is called The Cubby, and is named in honor of Kaleb.
"We named the shop after him because he is our hero," said Cindy. "Kaleb has been through a tremendous amount of surgeries, doctors appointments, poking and prodding and he is here and we are so blessed to have him."
"The Cubby focuses primarily on helping families in Aroostook County with life threatening illnesses," she continued. "As a family that has experienced it ourselves, we know how emotionally, physically and financially fatiguing it can be. It is our desire to help other families in this area meet those needs."
The idea of having a store named after him had Kaleb a little "freaked out", but he says it cool that his parents are helping others. Still, having his picture on the walls and even the cash register has left him a little embarrassed at all the attention.
So far the shop has been a huge success, with car load after car load of donations pouring in on a daily basis. The Johnsons are already contemplating opening a second store in near-by Presque Isle to meet the demand and help even more people.
"As long as we are meeting our needs, and we are assisting other families in the County, it is fantastic," stated Cindy.
The Cubby is open from 9am to 5pm Monday through Friday and 9am to 3pm on Saturdays.