BROOKINGS, S.D. (KELO) — A couple near Brookings is still processing some heartbreaking news following a scary medical diagnosis for their 2-year-old girl. However, they say the amount of support they’ve received has been overwhelming and helped them through this tough time.
Little Sloan Murfield is described by mom and dad as being sassy.
“For being two years old, she definitely has a lot of spunk, but she’s also very sweet. She’s always loved to just kind of hang out,” Sloan’s dad Kevin Murfield said.
When Sloan was around 18 months old, they noticed something was off.
“Heather and I started to see some regression going on with her. We were saying a couple words, saying, ‘uh oh’ and ‘daddy,’ and then she was starting to pull herself up. Not quite walking yet but was starting to develop some of those skills, but around 18 months, Heather and I started to see some of them start to deteriorating,” Kevin said.
They went to their local pediatrician, met with specialists and did a variety of tests, including one for genetics. They’ve been trying to find answers since May of last year.
“Last Friday we were informed that that she was diagnosed with Batten Disease, and then specifically CLN1 infantile Batten,” Kevin said.
“It was devastating. It took us by surprise. It’s not something we were expecting or had even heard of. They told us it was Battens Disease. They asked us if we had any questions, and at that time we didn’t even know what to ask,” Sloan’s mom Heather Murfield said.
They have learned more and more about the rare genetic disease since then.
“A certain enzyme that she is unable to produce herself, and so what it does, is it, the brain ends up attacking itself,” Kevin said.
They learned from doctors that as Sloan grows older, she’ll start to lose more and more of her daily skills and abilities.
“They don’t expect ever to be able to walk or talk, and then slowly, she’s going to lose the ability to swallow, feed herself, and we learned that it was a fatal diagnosis. We can never be specific or we haven’t found out like a certain timeline yet, but 10 years old seems to be about the longest that they’ve seen anybody live with this specific diagnosis,” Kevin said.
“Once we got that diagnosis learning that it’s terminal, I mean, it shook us to the core. She’s two years old. We’ve had two years with her, one of them has been a struggle as we’ve gone, but I mean, we’re taking it all in stride,” Heather said.
After this devastating news, they say spending more time together is a priority.
“Now we’re focusing on how we can give her the best possible life we can in the time that we do get to have with her. And then on top of that is just enjoying each other, being with each other,” Kevin said.
5-year-old brother Cainen helps to bring joy to his little sister and the rest of the family.
“I kind of like try to give her stuff to make her happy sometimes, and it kind of does not work,” Cainen said.
The Murfield kids both go to day care at Alysha Langstraat’s, a family friend who says Sloan is the sweetest girl.
“You’ll get along with her great, but if you make her mad, she’ll let you know. She will tell you, and I love that. I love her sassy self,” Langstraat said.
Langstraat organized a GoFundMe that has raised thousands of dollars.
“They deserve it 100% more than anybody. They’re awesome people. Super great. I love them,” she said.
And the Murfields say the support has been overwhelming.
“Was it five hours I think with the GoFundMe being active, we raised over $5,000, and it really does show you home is home,” Heather said.
“It just doesn’t seem like thank you is enough. It’s amazing to see all this stuff and to realize how much people can surround you,” Kevin said.
It’s now a goal for the this family to help Sloan live life to the fullest and raise awareness of Batten Disease.
The Murfield’s will now have more appointments for Sloan and some additional testing to learn more about the disease.
The GoFundMe page has raised nearly $14,000.
If you’d like to help, you can find the GoFundMe page online.