Hello all!

My dear friend and her brave 11-year-old daughter, Jaki, are in need of support. Jaki lives with a severe form of epilepsy and chronic nerve pain. Despite her daily challenges, she remains joyful, bright, and full of empathy for others. Her journey has been incredibly difficult, and her mom—a single parent of four children with medical needs—has carried a heavy load for years, and they could really use our help.

In November 2020, what first looked like night terrors turned out to be something much more serious. After three unsettling weeks, Jaki had her first full tonic-clonic seizure—followed by two more the same night. A hospital visit and EEG confirmed she has frontal lobe epilepsy. That moment changed everything for this sweet family.

Through it all, Jaki continues to amaze. She’s smart, kind, compassionate, and full of humor. When her seizures are under control, she tests at the top of her class. She loves swimming (which is nerve-wracking to supervise!), hanging out with friends, goofing around with her sisters, and cuddling with any animal she can. However, when the seizures flare up, her brain and body are pushed to the brink. She becomes exhausted, overstimulated, and struggles with pain that no child should endure.

Doctors are now considering brain surgery the next time her seizures become uncontrollable. Before going down that road, her mom is doing everything she can to try alternative, non-invasive treatments that may offer Jaki a better quality of life—with fewer risks and fewer side effects.

Jaki’s Diagnoses:

— Frontal Lobe Epilepsy: During flare-ups of seizure activity, Jaki experiences 3–10 partial seizures every single night, often escalating into tonic-clonic seizures. She has 1-3 during the day. Between those, her EEGs show subclinical seizures that continue throughout the day and night, robbing her of true rest.

— Possible CRPS (Complex Regional Pain Syndrome) or AMPS: Jaki experiences intense pain in her arms and legs, often tied to her seizure cycles. Her neurologist believes deep-brain sensory seizures may be causing it, but it could be caused by the intense psychological and neurological stress of seizures. During the worst episodes, which do not let up for days on end, she’s begged for death so the pain would end.

— Celiac Disease: Even trace exposure to gluten can trigger months of uncontrollable seizures. Maintaining a strict, specialized diet is critical—and expensive.

Her mom is a single parent caring for four children full-time, all of whom have medical disabilities. She works 35 hours a week and is also attending school to create a better future for her family. Childcare, medical needs, doctor’s appointments, school schedules, and a mountain of expenses mean she’s juggling more than most of us could ever imagine, and has been for 5 years. During the last major seizure outbreak, her mother helped care for Jaki during work hours—but she won’t be available to help next time.

She’s had to take time off work, rely on odd jobs, and carry debt in the past just to make it through. Despite being stretched so thin for so long, she is such a loving and patient mother and continues to show up every single day for her kids, working so hard to support her children in becoming successful, independent women.

Donations will go toward:

1. Treatments for Jaki, including:

* Neurofeedback and biofeedback therapy — $2,000 for an initial 10-session series, followed by reevaluation

* Specialized trauma therapy with a leading psychologist/hypnotherapist — $2400 total. The psychologist believes this will complete trauma treatment (he has a 93% success rate)

* Possible ketamine infusions for her nerve pain — cost would be ongoing unless the condition is improved by other treatments

* Emerging holistic therapies not covered by insurance

2. Medical care for Jaki’s siblings, who have significant medical conditions including severe POTS/dysautonomia and other nervous system damage (from COVID, not vaccinated), Celiac Disease, and more.

3. Transportation to hospitals and specialists, which are 1.5–2 hours away

4. Ongoing medical bills, dietary costs, and essential needs

This family is doing everything they can with what they have—but they need support. The goal is to help Jaki find relief without invasive brain surgery. To give her a childhood free of debilitating seizures and pain. To enable her mom to continue to work to provide for the family. To focus on healing instead of survival.

If you can donate, share, or send words of encouragement, please do. Every act of kindness helps lighten their load and brings hope to a cute family that truly deserves it.

Thank you for reading, and for caring.