Lend a Hand to Zaiden: A Rockstar Battling Epilepsy

Dearest friends, family, and all compassionate hearts,

My name is Krystal, and I'm reaching out to you today with a profound sense of humility and deep gratitude on behalf of my incredible friends, the Weatherford family, and their extraordinary 13-year-old son, Zaiden. For the past four years, Zaiden has been waging a courageous and unwavering battle against epilepsy, a journey that has tested his strength and the resilience of his entire family.

Through every challenge, every seizure, and every moment of uncertainty, Zaiden has shone with an inspiringly positive spirit. He is, quite simply, a Rockstar. Despite the immense obstacles he faces, Zaiden remains a fun-loving 13-year-old boy brimming with life. His vibrant passion for Lego crafting reveals a patient engineering mind far beyond his years, while his joyful singing fills their home with light and youthful imagination.

Navigating the ever-changing intensity of Zaiden's epilepsy over the last four years has required immense dedication and sacrifice from the Weatherfords. To be readily available for Zaiden's complex needs, they bravely embraced self-employment, offering the flexibility required but also relinquishing the security of paid time off. This shift, while essential for Zaiden's care, has inevitably placed a significant financial strain on their family. Every small contribution you might consider offering would be deeply and sincerely appreciated in easing this burden.

The next chapter in Zaiden's journey involves a critical step: a Vagal Nerve Stimulator (VNS) surgery schedule for May 29th 2025 at the renowned Mayo Clinic in Rochester, Minnesota – a six-hour journey from their home. This surgery offers a beacon of hope for better managing the frequency and intensity of Zaiden's seizures. However, the journey doesn't end there. Following the procedure, Zaiden will require multiple trips back to Mayo Clinic for essential calibrations of the VNS device to ensure it is precisely tailored to his unique needs. Ongoing follow-up appointments in the years to come will necessitate continued travel and significant expenses. Furthermore, battery replacements will require additional surgeries at minimum every 5 years.

Beyond the immediate medical needs, the Weatherfords are a family of six, and the everyday realities of life continue. Bills accumulate back home as they pour their hearts and energy into giving Zaiden the best possible chance for a brighter, healthier future.

For over four years, the Weatherfords have explored numerous avenues to support Zaiden, including many holistic measures. While these approaches have offered valuable support, they are often not covered by insurance, adding another layer of financial complexity. Your generous contributions will help ensure they can continue and even expand these complementary measures.

Furthermore, your support will also nurture Zaiden's passions, particularly his love for building intricate worlds with Legos. These creative endeavors not only bring him immense joy but also foster his remarkable patience and engineering aptitude.

Please know that no amount is too small. Every single contribution will act as a bridge, helping the Weatherford family navigate the intricate and often costly path ahead for Zaiden. Your kindness will not only alleviate financial stress but also provide invaluable emotional support, reminding them that they are not alone in this fight.

From the depths of our hearts, we thank you for considering a donation and for being a part of Zaiden's journey towards a brighter, more seizure-controlled future. Your generosity will make a tangible difference in the lives of this truly deserving family.

(To learn the full "summarized" backstory of Zaiden up to this point from his Mother, Erica, continue reading below...)

With heartfelt gratitude,

Krystal May

“From the very dawn of his life, within the sterile confines of the NICU, Zaiden earned his formidable moniker: “The Rockstar”. His entry into the world was fraught with peril, demanding a cascade of life-saving interventions. Yet, with the unwavering spirit of a true performer, he rallied against the odds, defying expectations by being discharged a mere thirteen days later, a stark contrast to the anticipated three-month minimum stay.

He embraced life with an unbridled energy, meeting every milestone with vibrant enthusiasm, until 2018 cast a long, unforeseen shadow. Hindsight now illuminates the subtle yet significant shift that began that year. A elementary playground second-grade pile-up on the slide culminating in a six-foot fall onto frozen ground, left Zaiden with a concussion, an event that would unknowingly alter the trajectory of his young life.

Roughly eighteen months after that hospital stay, unsettling episodes began to surface, mostly under the cloak of night, leaving Zaiden disoriented and adrift. Initial relief washed over us with the news that CT and MRI scans revealed no tumor or lesion, yet a gnawing uncertainty persisted. These perplexing events recurred sporadically for another six months before escalating into significant confusion accompanied by persistent headaches. The headaches then intensified, culminating in a diagnosis of acute confusion migraines, yet a deeper intuition whispered that a more profound challenge lay beneath.

Multiple frantic journeys to the emergency room ensued, each one etching deeper lines of worry. The most terrifying of these episodes plunged Zaiden into such profound confusion that he would momentarily lose his grasp on the fundamental anchors of his existence: the ability to walk, to speak, even to recognize the faces of his beloved family. As agonizing as it has been for us to witness these episodes, the sheer panic and disorientation Zaiden must endure within the confines of these seizures is unimaginable.

After an exhaustive odyssey of countless appointments, a battery of additional scans, a frustrating cycle of medication trials and dosage adjustments, six unsettling electroencephalograms (EEGs), and three emotionally draining hospital stays, the definitive diagnosis arrived: Epilepsy.

A subsequent continuous monitoring EEG offered a glimmer of hope – the potential to pinpoint the precise origin of his focal seizures. Tragically, this elusive source remained unidentified. During this very hospitalization, under vigilant medical supervision, his medication was discontinued for the purpose of the study. Within a mere 24 hours, thirteen seizures ensued forcing the premature termination of the study due to the overwhelming strain it placed upon him. To articulate the sheer agony and profound heartbreak of witnessing such vulnerability in our child transcends the limitations of language.

Zaiden's seizures have relentlessly evolved over time. In the initial stages of his diagnosis, he would experience unsettling visual auras and express a fear that, while nonsensical, was palpable, accompanied by the stark physical manifestations of a racing heart, profuse sweating, and an intense fight-or-flight response. Approximately eight months ago, a new, more alarming pattern emerged: tonic signs, where his body would become frighteningly rigid, his breath held captive, his lips tinged with a disturbing cyanotic hue. The necessity for rescue medication during these episodes became increasingly frequent. With the relentless passage of time, Zaiden's seizures have insidiously eroded his executive function and clouded his memory recall.

Each seizure has escalated in severity, culminating in the devastating events of last week – Zaiden's first grand mal tonic-clonic seizure, erupting within the safety of our home. We stood by, consumed by terror, desperately striving to protect him as we waited for the agonizingly slow arrival of the ambulance. Each minute stretched into an eternity as we watched his body convulse, his breath suspended, the most harrowing moments of our lives seared into our memory.

Living with a child who battles epilepsy is akin to perpetually dwelling under the ominous shadow of a tornado watch. The threat looms in the unseen expanse, the uncertainty of its descent and the extent of its potential devastation a constant weight upon our hearts. A persistent state of anxiety colors our perception of the future, yet amidst this apprehension, we tenaciously seek out and celebrate every small victory.

We cling to the hope that the impending Vagal Nerve Stimulator surgery will prove to be a turning point, our deepest aspiration being the complete cessation of his seizures, but realistically hoping for a significant reduction in their frequency, intensity, and the debilitating aftermath of the postictal phase. We will continue many holistic measures that have and continue to benefit him.

We are immeasurably proud of the unwavering positive spirit that Zaiden valiantly strives to maintain, even on days when the burden feels insurmountable and depressive thoughts overwhelm him. This relentless battle has undeniably taken its toll, yet he remains, true to his initial NICU title, our indomitable Rockstar.

A profound concern also occupies our thoughts: the delicate balance of time and attention we must navigate to nurture Zaiden's siblings, Axton (15), Haivan (11), and Embrelyn (3), ensuring their needs are not overshadowed by this demanding journey. Additionally, managing my own insulin dependent Type 1 Diabetes, which is undeniably impacted by high levels of stress, is a chronic daily struggle to contend with.

In the end, please know Josh and I are eternally grateful for any and all support extended to us as we navigate this complex and challenging path. Your continued prayers for wisdom and endurance as we navigate the challenges now and what lies ahead are profoundly appreciated. Thank you with every ounce of gratitude we possess.

Kind Regards,

Erica and Josh Weatherford”