NPBelieve

Nolan: Born Fighting,
Still Fighting

Update

On August 27, 2026, Nolan became the first person with KCNQ2 to receive an individualized antisense oligonucleotide (ASO) treatment.

It is difficult to put into words what it means to have reached this moment after years of searching, advocating, hoping, and refusing to give up. We are profoundly grateful to everyone who helped carry Nolan to this point — to the n-Lorem Foundation for developing and providing his individualized ASO, to the physicians, researchers, clinical teams, donors, family, friends, and KCNQ2 community who believed in him and in what might be possible.

This is not the end of the story, however. On the contrary, it is the beginning of the work ahead. There are still so many unknowns, but we remain hopeful and optimistic going forward. Nolan’s treatment will continue through a regimen of ongoing dosing, clinical care, testing, monitoring, and research; this will require additional resources to help understand any long-term impacts.

NPBelieve was created to support Nolan and the path surrounding his treatment, and research. ASO medication is being provided at no cost, but the inherent clinical and research work require support.

This has always been about more than just Nolan. He may be the first, but our hope is that his journey creates opportunities for many more children with KCNQ2 - that the knowledge and progress forged through this work can help advance future endeavors and treatment opportunities for others.

August 27 was not the finish line. It was the beginning.

We are deeply grateful for the support that has carried us this far and continues to surround us.

Original Story

A baby boy born with a rare, severe neurological disorder, with no treatment or cure but that is about to change.

A Mother's Plea...

My son, Nolan Paul Boulter, was born on February 3, 2018, blue and seizing — rushed to a level IV NICU where he fought for every breath. At just 17 days old, he was diagnosed with KCNQ2 Developmental and Epileptic Encephalopathy.

I was told there was no hope, but through relentless advocacy and research, in October 2020, Nolan was accepted into n-Lorem. n-Lorem is a nonprofit program that helps save those living with ultra-rare diseases by designing and developing custom genetic treatments, known as ASOs (RNA-based treatments) for nano-rare patients.

Without this medication, a future without Nolan is inevitable. Today, Nolan is blind, nonverbal, and fully dependent on caregivers. He can’t walk, sit or feed himself. He endures seizures, dystonia, respiratory distress, and frequent hospitalizations.

But Nolan is a fighter, and so much more than his diagnosis. He is a playful little boy who loves the wind on his face at the beach, bike rides with mom, snow tubing, cuddles, and music. He lights up around his big brother Thomas — his best friend and fiercest protector. Thomas’s wish? “I just want my brother to get better.”

A Chance at Hope

After an arduous five years spent overcoming countless scientific challenges and setbacks, Nolan’s personalized ASO therapy is almost ready. This treatment can provide Nolan’s body and brain stability and give him capabilities and opportunities that I dream of every night and fight for every day. I could watch my little boy take the world in through his eyes, hold his brother’s hand, hug his father tight. I could hear his little voice say "Mama" for the first time, know his thoughts and wishes, and watch him grow.

However, this treatment is not guaranteed, not because of the science, but rather a lack of resources.

n-Lorem is developing the treatment at no cost to us, but hospital fees associated with treatment administration are not covered and are projected to start at $300,000 for the initial year.

Nolan’s life matters. To know that his ASO is here, but my baby still may not receive this life-saving treatment because of funding is heart-wrenching.

Every delay risks further, irreversible damage. This is not a pipe dream — it’s a race against time.

We need your help. You can change everything.

You can offer hope. You can provide Thomas more time with his brother, and my husband and I the chance to watch our boys grow together. Every dollar is one step closer to giving Nolan and our family the gift of life.

100% of your donations go to support Nolan's treatment and finding a cure for this horrific disease.

Be the miracle. Donate today. For more information, please email NPBelieveCureKCNQ2@gmail.com