Having one child with a serious illness can be challenging. One KELOLAND family two children who have been in and out of the hospital… for two very different conditions.
Like most young children, Chris and Natalie Dose enjoy spending time at the playground. From the seesaw to sandbox, these two are busy.
“You can swing and you can do some fun stuff on the playground,” 6 year old Chris Dose said.
While they love to play at the park, Chris and Natalie have each spent more than their share of time in and out of hospitals. When Chris was about three months old, doctors diagnosed him with a congenital heart defect, known as VSD.
“It’s a hole between the two chambers of his heart, we ended up watching it closely with a cardiologist for about a year, then when he was one, he ended up having open heart surgery at the University of Minnesota,” mom, Brianna Dose said.
Everything seemed to be fine, but a few years later, something changed.
“It was when he was four years old and he started having these spells where he would have to sit down and he would turn kind of blue and it was after a monitor that we realized his heart was actually stopping for a couple of seconds,” Brianna Dose said.
Chris now has a pacemaker.
“Basically fixes his heart rhythms, keeps his heart from stopping but it’s not a 100% fix so his heart is forever going to be lazy, or forever want to stop, so he will need a pacemaker his whole life,” Brianna Dose said.
Since then, the family has been in and out of the hospital… not for Chris, but for his little sister Natalie.
“Through a lot of time and testing we discovered she has something called KBG syndrome and this is a very rare syndrome, there are about 200 people in the world that have it,” Brianna Dose said. “For Natalie that means she has epilepsy she has an immune deficiency, she has lung issues, she sees pretty much everybody at the castle.”
Natalie now has a port to make drawing blood and giving medication easier.
“We are in pretty much every week, so right now she’s doing infusions every week in the infusion center at the castle and then we also have monthly infusions, so she has quite a few infusions,” Brianna Dose said.
While it can be challenging have two children in and out of the hospital, Brianna is thankful for all the help from Sanford and the Children’s Miracle Network.
“I like to think of Sanford Children’s and Children’s Miracle Network as our community, our people, they’ve got our backs when things are really hard and I can say that we wouldn’t have coped as well with everything that’s happened if we didn’t have them around supporting us and helping us out,” Brianna Dose said.
This family has been through a lot of ups and downs… so it’s reassuring to know that so many people care.