Single mom ready to battle multiple sclerosis

POST FALLS — When Lauren Agostinelli's 2-year-old daughter, Eden, skinned her knees and cried Tuesday, Agostinelli was right there to swoop up the rosy-cheeked child and comfort her.

The Post Falls woman wants to continue to have a normal life with her children and not be confined to a wheelchair, which is what her doctor fears will happen if drastic action to combat her aggressive multiple sclerosis isn't taken soon.

"My spine is polka-dotted with lesions, but they haven’t gone deep enough that it’s completely severed it,” she said. “It’s not a matter of ‘if’ you face disability, but 'when.'"

From the outside, observers wouldn’t know the 31-year-old single mom has

relapsing-remitting MS. But on the inside, Agostinelli’s condition is wreaking havoc on her body — she is often fatigued and has suffered episodes of numbness and intense muscular spasms.

"I became immediately concerned about her future," said MS expert and neurologist Dr. Louisa Lavy of Kootenai Neurology Clinic. "She doesn’t have the reserve and endurance that someone else her age has because MS has taken a huge toll on her brain and her spinal cord. Her burden of disease activity is higher than you would expect … but she’s using up all of the reserve that’s going to get her through old age."

Agostinelli was diagnosed in 2012, but has been experiencing relapsing-remitting symptoms since 2007 when she almost lost all vision in one eye, just for it to return and drop in the other.

"It seems surreal when you get a health diagnosis," Agostinelli said. "As soon as my doctor walked into the room carrying my medical reports that day, I just knew that something was going to be changing forever and that it wasn’t good."

Her MS has been surprising; she functions at a high level, but screenings show a battle happening inside. In January, Lavy discovered Agostinelli's MS had escalated.

"I was shocked because (her thoracic spine) was riddled with disease," Lavy said. "I realized right there that I was dealing with someone with such a high disease burden and was hiding it only because of how robust her neurologic reserve is that anyone else who had that disease burden, the average person, would have already been using a walker."

Because of the aggressive activity of Agostinelli's MS, she has qualified for a hematopoietic stem cell transplant, or HSCT. She is scheduled for the procedure in September.

However, HSCT procedures are not covered by U.S. insurance providers. Agostinelli has qualified for and been accepted into an HSCT program for MS patients run by Dr. Riccardo Saccardi of Carregi University Hospital in Florence, Italy. She is the second female patient of Lavy's to follow this course of action. Last June, Coeur d'Alene mom Angie Delio underwent the extensive procedure which has since halted the advancement of her MS.

"It went great, I'm doing really well," Delio said Wednesday. "It stopped the progression."

The intense HSCT basically resets the immune system and takes several months to recover from, but has been shown to have a high rate of success. The National MS Society states one multi-center, five-year trial called "HALT MS" reported interim results that three years post-HSCT, more than 78 percent of the participants had no new disease activity.

"I think it's worth it for people who have a highly active disease like Lauren," Lavy said, explaining this option was the best way to go compared to expensive medications that could have lethal side effects.

In the U.S., HSCT could cost about $400,000, but Agostinelli's total cost in taking her health needs outside the U.S. is about $100,000. Agostinelli and her parents have contributed toward the total and their friends and church family have helped raise $51,000, but they're still $49,000 shy of the goal.

"I’m happy with what we’ve got so far, but we definitely want to get the rest of it," said Agostinelli's good friend, Kayla Garn, who will be helping to take care of her son, Phoenix, 6 and Eden while she is in Italy for three months.

"We both are very faithful people so I really believe that God’s going to get us there with the rest of the money and he’s going to inspire people to give to Lauren, especially as we get this out to people and share her story," she said. "When you meet Lauren, she’s so good and kind."

Agostinelli said the fundraising, while necessary, comes second to sharing her story and letting others know that an MS diagnosis does not have to mean life is over.

"It just feels like this is not meant to be about me and my story. It's just one of thousands of people's stories," she said. “There are so many women up here in this area and Washington and Canada who have it. I was in denial about it the first few years. Because I looked normal, I was like, ‘There isn’t a problem,’ but I wish, looking back, that I would have taken it more seriously in the beginning, been more open about it and not been scared to be vulnerable and to admit that I have a health challenge."

A "Help Us Help Lauren" all-you-can-eat pancake breakfast will be held Saturday from 7:30-11:30 a.m. in the parking lot of Findlay Auto Group in Post Falls, 1665 E. Edmonton Ave., to rally funds for Agostinelli's procedure. A benefit concert will also take place at the Kroc Center in September.

"I want her to be able to keep bike riding with the kids and running around and doing all that she can do," said Agostinelli's mom, Linda, who will be accompanying her to Italy. "It’s all coming together for this to be able to help … we just pray that she can go with the most reserves possible, that she can take the treatment as well as possible and come home."

To donate or for information, visit www.helpushelplauren.com or email FightMSwithLauren@gmail.com.