Hello everyone! 

I’m a close friend of the Raekes family, and I’m reaching out to share their story about their beautiful baby boy, Hendrix. 

On July 24th they received an unimaginable diagnosis that no parent should ever have to hear. After months and months of searching for answers, countless doctor appointments and being dismissed by multiple doctors. A genetic test result came back showing their sweet perfect 4 month old boy has a recessive disorder called MED17. This is an incredibly rare genetic condition, less than 20 reported cases ever. Currently there is no known treatment and little known about this disorder, so while they are praying fervently for a miracle (& asking others to do the same) they, along with his medical team, are diligently researching any possible options to help their boy. As it stands, his doctors believe that it will progress rapidly and that their time with Hendrix is limited. Due to the severity of his symptoms at such a young age they project that in the very near future he will begin having seizures and lose the ability to breathe on his own. They are devastated, and praying for a miracle.

The backstory: 

At about a week old Matti & Tanner recognized that Hendrix seemed to cry and arch his back in what seemed to be pain. They took him to their midwives and pediatrician who recommended chiropractics. He had multiple ribs out, so they began scheduling him 1-2 times a week for “adjustments”. This brought some relief but he still spend most of the day inconsolable. They also began weekly craniosacral therapy appointments to help with what appeared to be nerve pain. Again, some relief but still in pain. After more doctor appointments and a recommendation from their pediatrician, they had his tongue and lip tie released at the dentist office. Unfortunately, no noticeable relief for Hendrix. At this point Hendrix was 2 months old and was crying for an average of 6-8 hours a day and not getting any real sleep. Arching his back in what could only be interpreted as excruciating pain. Matti and Tanner knew this was not your average cry, and despite what they were told from multiple doctors, they knew this was not colic. They held out hope that it was something so simple that their sweet baby would outgrow his misery. They continued searching for answers, spending countless hours online and fighting for their son, all the while trying to maintain jobs and keep things as normal as possible for their three year old, Carter. Matti changed her diet, cutting out food groups in hopes it would help his stomach and digestion. Again no change. They then started having concerns that he wasn’t tracking well or smiling often but their fears were met with the feeling that they were overreacting because he was physically thriving. Often they would be describing his symptoms to a physician who was looking at a beautiful resting baby and no amount of conveying how horrific it was to get to each appt seemed to make up for the fact that they weren’t witnessing his agony. All the while the length of his crying continued to grow. After a particularly hard day they decided to take Hendrix to the emergency room. There, the doctors also felt confident that it was an extreme case of colic and he that he would outgrow it. Matti and Tanner at this point were holding their sweet baby who was screaming in pain for a minimum 10 hours a day. It seemed inconceivable that colic was the answer. They again went back to the ER and this time they saw an incredibly compassionate doctor, Ty Nealson, who took their concerns seriously. He ordered X-rays and an ultrasound and saw an incredible amount of air in Hendrix’s abdomen. He suspected that was the source of his pain but encouraged them to trust their gut and planted the seed to video his episodes. He also told them to never feel bad about advocating for their baby. The following week they finally got to see a GI specialist in Spokane. Unfortunately the specialist basically shamed them for coming since Hendrix didn’t appear to have anything emergent and then quickly dismissed them with the same answer. Colic. Another heart wrenching drive home listening to their baby scream in pain. Tearfully discouraged. Exhausted beyond belief they were committed to loving their boy and helping him. An encouraging phone call to a family friend and retired physician, Dr. Butler, reminded Matti to trust her instinct and keep fighting for Hendrix. They continued weekly appts with their pediatric chiropractor & weekly cranialsacral appointments traveling an hour each way searching for answers and praying that they could find comfort for their son. They added an additional pediatrician who also believed it was an extreme case of colic. They were all convinced that he would grow out of it by the time he turned one.

Praise God for the love and support of a friend who organized a 3 day prayer and fast for Hendrix at this point, believing for a miraculous healing. On the 2nd day of the fast a NICU nurse, Danielle Nipper, saw the videos of Hendrix and knew this was not colic. She sat and held Hendrix for hours, listening to his story, and reaching out to colleagues who immediately agreed - this was not just a baby with colic. Someone finally saw what they were seeing and was as alarmed as they were. Confirming what they had begun to believe that something was going on neurologically. They were encouraged to once again go to ER and this time push to get an EEG. Armed with newfound confidence they took Hendrix to the Kadlec emergency room where they were met with Dr. Jay Loera, filled with compassion, he listened to them and ordered an EEG. They noticed abnormal brain activity but couldn't say with certainty if it was seizures. He recommended going to Sacred Heart Childrens Hospital for further testing. The team there was amazing and began by performing a 24 hour EEG. Again, this did not show seizures but confirmed more abnormal brain activity and noted that Hendrix was never going into a deep state of sleep. They put him on gabapentin and ordered additional bloodwork and an MRI. On Hendrix's 4 month birthday the MRI results came back showing two areas of scar tissue in his brain. One of the areas of scar tissue seemed to be more recent which they believed showed progression and given the additional tests they had run it led the Drs. to believe Hendrix had either a metabolic or genetic condition that was attacking his brain. They drew more blood and sent it on for a full genetic panel. They also schedule an MRS, which required him to be put to sleep - then the were then sent home to wait. 

A few days at home, Hendrix was still in agony so they headed to Seattle children hospital to get a second set of eyes to look at his records. Hendrix had another extended EEG test. They mentioned that though he may not be actively having seizures, he is at a higher risk. That same day the results of the genetic test came back and they learned via zoom that their sweet little boy had something they had never seen before. A genetic condition so profound that a number of the physicians have begun researching anything they can possibly do to help Hendrix.  

There are no words that could express their grief. Months of fearing that their baby’s agonizing cries were caused by irreparable damage was confirmed. Their only hope for him to have a normal life is a miracle. 

They are grateful for the outpouring of love and prayers and truly clinging to the hope of a miraculous healing and ask that you please don’t stop praying for Hendrix. However, as the reality of what Hendrix’s life will look like (if healing doesn’t happen this side of Heaven) settles in we have been overwhelmed by how many people have asked how they can help support them so we are setting this up as a way to stand along side them in this heartbreaking journey.