It's almost been one year since the beginning of this journey...
At around 3am on Friday, August 27th, 2018, Krystal Festerly woke up to her husband, Nehemiah, saying "help me". He was holding the youngest of their three daughters on his chest. Krystal reached over for little Charlotte just as Nehemiah fell off the bed in convulsions. Krystal jumped out of bed to turn on the light and found her husband crumpled on the floor in a full Grand Mal seizure, face down, foaming out of his mouth, bleeding, and choking. Krystal has a medical background so lept into action to help him while he thrashed and vomited on the floor, and as little Charlotte screamed, "daddy needs a band-aid!". Krystal was finally able to call 911 and just as she did, Nehemiah stopped breathing. Krystal begins CPR with the 911 dispatcher on the phone. He finally took a big breath, then stopped again, and eventually began labored breathing. The paramedics arrived shortly after and got him to the hospital with Krystal following behind.
A CT scan showed an Ateriovenous malformation (or AVM) of the brain that was the cause of the seizure. An AVM is an abnormal connection between arteries and veins in the brain or spine and is very rare with less than 200K cases in the US each year. An AVM is usually present at birth. AVMs can rupture causing bleeding into the brain or spine.
Just after Nehemiah's parents arrived that night at the hospital, he had another seizure right there in front of them and Krystal.
Since last August, Krystal and Nehemiah along with their three girls, have been on a roller coaster of a journey. In December, they were told the AVM is located in a very delicate area of his brain and the neurosurgeon would not attempt surgery. Instead, he suggested radiation treatments to shrink the AVM over a period of three years. This would hopefully slow down, or stop, the continued seizures Nehemiah was still having. In January, Krystal and Nehemiah were told that radiation would likely not have an effect on the seizures but only erase the risk of Nehemiah having an aneurysm. The risk of stroke or sudden death would always be there which meant he would continue to be medicated for the rest of his life. Then in March, they were told radiation was no longer an option and brain surgery was back on the table. This past June, they were awaiting brain surgery as if it was just around the corner...the one option every neurosurgeon had previously said "no" to was now the ONLY option after discovering the AVM had grown again and radiation would not be effective.
Then, just last month, the Festerly's nightmare became reality when Nehemiah's AVM ruptured and was bleeding into his brain.
Nehemiah has been in the ICU ever since and Krystal is spending as much time up there as she can while trying to care for three little girls, keep the house together, and make sure her yard doesn't turn into the Amazon forest on top of trying to bring in income for their family as the sole provider. Upon admittance in the ICU, they were told surgery was going to happen as soon as Nehemiah was stable and healthy enough to endure it. Due to the size and nature of his AVM, it's not a question of IF it will rupture again, it's a question of WHEN.
They've both been through hell and back with this ICU stay....Nehemiah has crashed more than once, been on a ventilator to keep him alive, forgets everything on a daily basis, has had several embolizations, and multiple EVD’s (exterior ventricular drain) to drain his brain bleed, as well as several complications related to all of those things. This has resulted in an enormous amount of stress and anxiety for Krystal every time she leaves the hospital to care for their children. Nehemiah hasn't driven or worked most of the last year and Krystal is doing her very best to keep it all together for her family. Their journey is certainly far from over and they are most definitely not out of the woods in regards to Nehemiah's health.
Krystal's work revolves around building a Village for mothers and families. She has poured the last 6 years of her life into The Village Magazine (gatherthevillage.com) and related community-building events nation-wide. I can personally say Krystal and the Village she built in southern California was a direct influence on pulling me out of post-partum depression after my second baby was born. She creates beautiful spaces and intentional conversation to connect mothers and families during the chapter of life when we need support - a Village - the most.
Now, Krystal and Nehemiah and their family need us, their Village. They needs us to come together just as Krystal has shown us and support her. Lift her up in prayer, encouragement, and financially. Just like all of us, the Festerlys have bills to pay, small girls to feed and clothe, a home to care for, and gas to get to and from schools and the hospital. It's time to Gather the Village and hold this family up as Nehemiah fights for his health and his life and the chance to be a father to Eleanor, Maxine, and Charlotte.
Consider contributing to this beautiful family and sharing their story far and wide. Any amount helps keep Krystal and Nehemiah afloat during this very difficult journey. Ask those in your local Village to support the Festerlys. We are all one Village world-wide and we can use the internet and this platform here to connect us all and give to those who need us.
In love, Lindsay and all of us in Krystal's Village
You can also follow Krystal and the Festerly’s journey on Instagram @krystalmfesterly. Thank you for your consideration and contribution ❤️