For nearly 13 years our daughter, Brigitte, has suffered from chronic daily headaches. 24 hours a day, 7 days a week with no relief.

She was only 23 years old when this began. An age when life should have been opening up with excitement, opportunities and dreams, instead became the beginning of a relentless battle with pain that has never left her. She was eventually diagnosed with New Daily Persistent Headache (NDPH), a very rare neurological condition. The cause is unknown, it is very difficult to treat and there is no known cure. Her pain is ever changing. It shifts, intensifies and transforms throughout the day. She often hides her pain making it difficult to see her suffering. On any given day, she may appear fine, but behind that brave face, she is suffering in silence.

When we asked our daughter to describe the pain she lives with every single day, this is what she shared:

“My pain often feels like a vice, continually adding more and more pressure, sometimes accompanied by the sensation of heat. Lately its felt like hundreds of rubber bands wrapped around my entire head, preparing to burst with pressure.”

“I often feel stabbing sensations as well, like a thick needle or ice pick embedding itself into my brain.”

“At times, my forehead aches or I feel pressure behind my eyes and my vision blurs.”

“My face can be very sensitive. Sometimes I’m in so much pain my hair hurts and I can’t wear clips, headbands or even sun glasses. My head often feels very heavy, sometimes causing me to get dizzy from the weight of it.”

“There is ALWAYS some form of pressure or tightness, but a symptom of my condition is that it is constantly changing. My pain moves, shifts and evolves, so I have to accept whatever comes my way.”

“For almost 13 years, pain has become my “normal.” Some days, all I can do is survive until the next day. I’m grateful for the small infrequent pockets of relief, but I never know how long they will last.”

As parents, hearing your child describe their pain this way and not being able to fix it, is utterly heartbreaking. No one should have to live like this, especially for 13 years, never knowing if it will ever get better.

Over the years, she has fought tirelessly to find answers. She has tried 14 different medications through exhausting trial and error. She has endured painful botox injections, acupuncture, chiropractic care, hypnotherapy, some osteopathic methods, countless doctors, neurologists and specialists visits and most recently a trip to the renowned Mayo Clinic in Jacksonville, Florida. We had high hopes that trip would finally bring clarity, answers and a path towards relief. Instead, we left there feeling defeated, disappointed and heartbroken. The appointment was much like any other neurologist appointments she’s had in the past. There were no new tests, bloodwork or procedures, rather lots of questions and recommendations to revisit botox adding in some new injectable treatments, using a Nerivio prescription pain device and various other medications. She was also advised to follow up with her neurologist back home, the very neurologist who had originally encouraged her to seek help at the Mayo Clinic because her headaches are so complex and outside the scope of what a typical neurologist normally treats.

In the past year and a half, the severity of her pain has increased exponentially. She is missing work more often and her quality of life has been greatly impacted. Plans are canceled. Opportunities missed. Simple joys are overshadowed by constant pain. And yet, she remains one of the most kind, compassionate, intelligent, selfless and beautiful souls you could ever meet. She is the person who shows up for others, the one who listens, the one who gives, the one who puts everyone else first. She continues to show strength and grace that humbles us every single day.

Giving up is not an option; however, the expenses of pursuing help are overwhelming: MRI’s, tests, procedures, botox treatments, prescription devices, medications, countless doctor, specialist and neurologist visits, the possibility of surgical interventions, mental healthcare, travel expenses, time away from work and an annual $7,800 deductible that must be met before insurance begins to pay a portion of any of these. Even then, many treatments are not fully covered, if at all.

We are asking for help to ease her financial burdens so she can continue pursuing the care she so desperately needs and deserves and hopefully reclaim the life pain has taken from her, without the added stress of how to pay for it. Any support, whether through donations, prayer or simply sharing her story, means more than words can express. Our greatest hope is that one day she will wake up, know a life without relentless pain and start living it. Thank you for standing with Brigitte and helping us hold onto hope that better days are still possible.

With much love and gratitude,

Her mom and family

Patty, Tom, Brigitte, Joey and Megan