March 11, 2024 was supposed to be the start of a fun week of Spring Break. Instead, it turned out to be the worst day of our lives.

Blaire Lania Helstad was born February 6, 2016. She was our second child and first daughter. As an infant, she was so determined to walk that she gave herself rug burns on her forehead! When she figured out how to crawl, she did it faster than any baby I’ve ever seen. She was so efficient at crawling that she didn’t walk until 14 months. Then, she pretty much skipped walking and just ran. So. Fast!

Blaire loved music. She could hear a song only a few times and sing at least the chorus on key. She was our constant background music. She was so attuned to music that when we went to quiet stores, she would say, “Mom, something’s missing. There’s no music!”

Blaire loved art. She didn’t love coloring books because she wanted to create her own art on blank paper. The week of Spring Break, we were supposed to go see her polar bear chalk art at the youth art show at the local college. She never got to see it on display.

Blaire loved sports. Since birth, she has been cheering on her older brother in all his sports. She announced to us one day that she wanted to play every sport she could! So, we got her involved with soccer and swimming as early as we could. Then basketball, volleyball, and track. At the end of February, she was nominated by her basketball coach to represent all girls in kindergarten through second grade in our town of 9,000 by getting her picture in the local newspaper. She was so excited to be chosen for this honor, but she never got to see her picture in the paper—it came out two weeks into our hospital stay.

Blaire loved school. She loved meeting new people and playing with a variety of kids on the playground. I think she knew every kid at her elementary school—K-4^th grade—even though she was only in 2^nd grade. She was the kid the teacher put all the new kids by because she was so friendly.

Blaire loved people. When we would arrive at her older brother’s sports games, she would scope out the crowd looking for kids to play with. After spotting one (or more) kid, she would ask if she could go play with them. I would ask if she knew the kid(s), and usually she didn’t. I usually said it was fine, but would remind her to not be bossy. As I watched her play, she would somehow convince these new friends to play games with their toys that she made up! She had so much natural charisma.

Most importantly, Blaire loved Jesus. About 1 ½ years before March 11, 2024 (the day our world stopped), Blaire realized she was a sinner and asked Jesus for forgiveness of her sins. She became a child of God. We saw repeated evidence in her life that she tried to do what was right and live like the Bible teaches. She had attended church all her life, but mere church attendance isn’t what saves a person. Believing that Jesus conquered death on the cross for one’s sins as explained in the Gospel is what gets a person to heaven (John 3:16; Romans 3:23; 6:23; 5:8; 10:9 &10; John 10:27-29; Revelation 20:15; John 14:1-6).

To us, it seemed like the sky was the limit for what Blaire might do with her future. To us, it seemed like she “had it all.”

We must choose to continually remember that His ways are higher than our ways (Isaiah 55:9) because our plans for Blaire’s life completely changed on March 11, 2024.

I was at a dentist appointment Monday morning March 11, and my husband went to wake Blaire up. The week prior, she had headache for a couple days, as well as a fever. We kept her home from school for a few days and took her to the doctor. Her doctor ran tests and determined it was likely a virus. She seemed to be getting better. She was running around outside March 10, we were cooking off maple syrup, and she even made her first basket in the 10’ hoop!

But that morning, Blaire had a “tonic clonic” (previously called a “grand mal”) seizure in her daddy’s arms. My husband had the wherewithal to get some of it on video, with our son recording. He rushed her to the local ER himself (we live in the country and it would’ve taken the ambulance longer to get to our house). She never became fully conscious after that first big seizure. While in the ER, she had an allergic reaction and turned blue, requiring intubation.

I flew with her in a helicopter to a PICU within our hospital system. After a short stay there, and determination that this was rarer than expected, we had a choice of where to fly next. With help of Blaire’s care team, we chose UW-Madison Children’s Hospital (also known as American Family Children’s Hospital). Blaire had continued seizures almost the entire first week, and was put in her first induced coma on 3/18/24. It took them almost double the amount of medicine to get Blaire into the coma as it “should have”. Once there, and seizures finally stopped, her brain was in a healthy “firing” mode - basically doing mostly what they would expect a brain in an induced coma would do. They started bringing her out of the coma Friday, 3/22/24. Doctors ran multiple blood tests to try and determine the root cause, but results showed nothing. Geneticists collected samples for genetic testing, sequenced her entire genome, and it showed no preexisting genetic conditions. This means that we will likely never know the root cause of why this happened.

Blaire’s MRIs showed damage to the basal ganglia; a region that is not consistent with the seizures she was having. This was very puzzling to the doctors—this was a separate issue with yet another unclear cause. We don’t have much knowledge of how a child’s brain can respond to and repair that damage since most data that exists on these basal ganglia injuries are from traumatic brain injuries in adults (and adult brains don’t heal the same way a child’s brain heals) or infants (who have brains that are still developing so aren’t good reference points). We were prepared for a potential future state for Blaire that may be like someone with cerebral palsy, but even that guidance was more like a concept to think about than anything sure. Neurologists scoured their sources to continue trying to find cases like this in the WORLD. Blaire was labeled with FIRES (Febrile Infection-Related Epilepsy Syndrome), an extremely rare epileptic syndrome that causes recurrent seizures and would’ve required multiple treatments and long-term care. We’ve learned that FIRES really isn’t a diagnosis, it’s a syndrome doctors label a child with Super Refractory Status Epilepticus (SRSE). FIRES is just used for kids who have no history of seizures and they are unable to find a cause. If you google SRSE it has a 30-50% mortality rate and a 30% morbidity rate of the remaining 50%. Not a good prognosis. Most of the doctors who took care of Blaire have never seen a SRSE kid this tough to stop seizures. She also developed myoclonic jerks that we understand are worse than seizures, called SIRPIDS (Stimulus-Induced Rhythmic, Periodic, or Ictal Discharges). 

Blaire had a tracheostomy surgery 4/6/24 as it was safer for her to have that in place for her long period of hospitalization. She was put on the Keto Diet for a several weeks since that has proven effective for some patients having persistent seizures as another (and safer) form of treatment. After trying the Keto Diet different times, it ended up being an ineffective treatment for her.

In the midst of all Blaire’s issues with seizures, she had an extremely rare drug reaction called DRESS, also known as Drug Reaction with Eosinophilia and Systemic Symptoms. This gave her a massive rash all over her body, as well as had internal ramifications. They had to do a scope of her colon and take biopsies which kind of confirmed DRESS. Pharmacy narrowed the drug reaction down to 5 possible drugs of the 38 that she had been on. The GI doctor consulted a colleague who had never seen DRESS in a child in his 35 years of practice. She also had a few other GI issues going on just from being sedated for 6 weeks.

On 4/11/24, the neurologists decided it would be best for Blaire to be put into a second coma. They were hopeful that this would “reset” Blaire’s brain’s tendency to seize. It was only supposed to be a 48-72 hour coma, but they kept her in it for 7 days for various reasons. They began weaning her off the coma meds at the end of April 2024, but had to pause that for a few more days since her seizures and myoclonic jerks returned.

Unfortunately, Blaire made history April 26, 2024 today by being the 6th known child in the WORLD to receive ECT (Electroconvulsive Therapy) for SRSE/FIRES. At this point, Blaire was put on the highest possible doses of every anti-seizure drug and nothing was stopping the seizures. This was extremely experimental because they were really getting down there on the things they had left to try. The theory is that by purposely creating a seizure, it will essentially override the electrical activity her brain is making in her seizures to hopefully put them to a stop. We were assured this was a safe procedure and that it did not cause further brain damage. It did not stop the seizures for our poor little Blaire.

Blaire had a risky surgery to implant a VNS (Vagal Nerve Stimulator). Think of a VNS as a “pacemaker for the brain.” Due to Blaire’s refractory (non-stop/didn’t respond to meds) seizures, this was surgically implanted to try to interrupt the electrical process when seizure occurred. Blaire’s had to be turned up to very high levels and this still did not stop her seizures.

The same day the VNS was implanted (5/2/24), we got more devastating news. Blaire had fluid built up on her brain for unknown reasons. This condition has never been associated with FIRES patients. She had to go back for surgery again right away to get an EVD Extra Ventricular Drain (EVD), which simultaneously drains the excess fluid off her brain and measures the pressure at which it's draining. Neurosurgery does procedures like this several times a month, in fact, it's more common than VNS surgery, which she had earlier in the day. What made this operation so risky with Blaire was her acute state, as well as the unknown origin of the fluid buildup.

Blaire’s gastrointestinal issues began in April 2024 and even though she was put on several different drugs – even one that had to be approved at the highest levels of the hospital – nothing worked to help fix her gut. Most of Blaire’s hospitalization required that she be “fed” through TPN (Total Parenteral Nutrition), which means through her veins. We tried several times to feed her through her gut, and the longest stretch we tried last summer ended up leading her to be “severely malnourished” as I read in her chart. She wasn’t able to absorb food through her gut.

The events just discussed regarding Blaire’s hospitalization were just the first 52 days of Blaire's crisis; Blaire lived for another 200 days in the hospital before succumbing to her disease November 19, 2024. A lot more happened in the next 200 days that’s not included here. If her life were made into a Hollywood movie, no one would watch it because people would probably say it's too farfetched. We could tell by both body language and conversation that Blaire's case threw every doctor we’d encountered for a loop. They've literally never seen any case like hers.

The overall plan was to slowly wean Blaire off some sedating anti-seizure medicines over the to see what she was capable of. We ended up getting her off ketamine and midazolam slowly over time. These anti-seizure meds are very sedating. Once those were out of her system, something amazing happened: Blaire opened her eyes! We had scores of hospital personnel come by to visit in those first few days that Blaire opened her eyes because most people never expected her to open her eyes after all she went through.

As we reflected the numerous unwelcome surprises, we reminded ourselves that none of this took God by surprise. Our times are in His hand (Psalm 34:15), and every one of our days are written in His book, "when as yet there was none of them." (Psalm 139:16) We did not know at that time how many days Blaire would live, but God says in His Word that He knows the number of days we all have. We believe that. The hard part for us human parents is the uncertainty and waiting, as it is with all people who go through difficulties in life. We all want answers now and don't want to wait. But, God has His own clock, which He uses for His own purposes. In the waiting is where the trusting comes.

Through all of these ups and downs – and there were MANY – we are choosing to trust the Lord and His plan for Blaire’s life and our lives. Each night we tell our kids, “Always do what’s right, even when it’s hard.” We need to follow that same advice. Sometimes it’s not easy to trust the Lord in these difficult circumstances, but it’s the right thing to do. We don’t deserve God’s love, but he chose to give His Son Jesus to die on the cross for our sins (John 3:16) BECAUSE He loves us! We believe God was and is 100% in control of this situation. We needed reminders when things seemed so upside down, but that is where the promises in the Bible come in. We continually read God’s Word. For example, a couple of our theme verses were from Lamentations 3:22-23, “The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness.” We cling to those underlined absolutes. The Lord has been faithful and continues to be. We have seen many answers to prayer. We ask that you pray that Blaire’s life will continue to reach people for Jesus.