Urgent: Langston Needs Epilepsy Care at Boston Children's

Latest Update (7:27 p.m., Thursday, June 6, 2025)

THANK YOU! We have met our goals. I have turned OFF the option to continue to accept donations.

The last 36 hours have been pretty amazing. I woke up with the intention to donate platelets (not plasma). In the middle of the procedure, Nurse Anna from Boston Children's called me. They had an appointment for the following Wednesday. Could we make it, Anna asked. Yes, I answered.

After that, I knew I had a "few details" to work out in order to "make it" to Boston.

My truck was full of recyclables. I raced to the recycling center, dumped the carboard, plastic, paper, et al, and bolted home. I quickly published this GoFundMe campaign.

The first donation came in almost immediately. Thank you, Jessica!

I had other work to do for my company, Holy Composting & Recycling. I could not sit and watch for updates on the campaign. My partner gave me updates. Incredulous. The numbers kept climbing. Quickly.

A few hours later, we had raised the original figure we set out to raise.

During this very time, seriously, I received the text in the photos above stating that our visit estimate was over $1,000. I raised our goal.

And now. We have surpassed even this.

Thank you. With all my heart. I'll have updates once we're in Boston.

Thank you! Thank you! Thank you! -Evan

Bring Langston Back to Boston: Stop His Seizures

Dear Friends, Family, And Folks I Am Yet To Meet-

First: Thank you so much for your tremendous generosity. If we reach $4,500, I am going to stop accepting donations. I am not comfortable raising the amount a second time, as all of the expenses I can think may come about from our appointment at Boston Children's will be covered.

Now:

I'm writing with a heart full of love and hope for my beautiful son, Langston.

Langston battles a rare and severe form of epilepsy called ESES (Electrical Status Epilepticus during Sleep). Langston has lost the ability to speak and hear several times over the past five years . His cognitive abilities have cratered when ESES was present, and then skyrocketed when ESES was gone. No medical procedures or medications helped Langston from 2021 to 2023.

In August, 2023, a treatment at Boston Children's Hospital gave us an incredible miracle: Langston's seizures, which had plagued him 86% of the time during sleep, dropped to zero. Until last month, Langston had relief. He began to speak again. He began to hear again.

Tragically, that relief is completely gone. Langston’s seizures have come roaring back. He is now seizing an agonizing 96-100% of the time in his sleep. Watching him endure this regression is unbearable.

Our lifeline is Boston Children's Hospital. The team there, led by Dr. Loddenkemper, has seen Langston before and achieved the impossible. We have a critical appointment scheduled NEXT WEDNESDAY, June 11th, to get him back on track and stop this relentless storm in his brain.

Getting Langston to Boston urgently is essential, but the costs are overwhelming. We humbly ask for your support to cover:

Our goal is $4,500 to make this urgent trip possible.

Our Promise: We believe in paying hope forward. Any amount beyond our $4,500 goal will be donated equally to the epilepsy wards at Scottish Rite Children's Hospital in Atlanta and Boston Children's Hospital to support other kids who are fighting similar battles.

Langston deserves his chance at a seizure-free life again. Boston gave him that once, and we believe they can do it again. Please, help us get him back there next Wednesday. Your donation, no matter the size, brings us one step closer to stopping his seizures and restoring his childhood.

With Immense Gratitude-

Evan

P.S. Time is critical. Please consider sharing this campaign – every share matters for Langston! Thank you for being part of his journey back to health.

How Funds Will Be Used:

Airline Tickets - $2,400

Hotel (Two Nights) - $450

Transportation to/from Airports (Four Trips) - $300

Food + Activities Tuesday-Thursday- $450.

Boston Children's Bill- $1,054

Any amount not spent I will add to any overage of fundraising goal we receive to donate to Scottish-Rite and Boston Children's Hospital for their epilepsy centers.

Thank you!!!

Y'All-

Thank you. With all my heart.

Update 06/05: Just received a bill from Boston Children's for $1,054. Langston's mom has health insurance coverage for the kids. ONLY IF okay with y'all, I will wait to see if this bill is covered. If not, I will use funds from this fundraiser to pay the bill. If yes covered, I will proceed to split funds with Scottish-Rite and Boston Children's epilepsy centers.

Update 06/04 We reached the goal. I'm not going to raise it. Anything else we receive is going to Scottish-Rite in Atlanta and Boston Children's for their epilepsy centers.

I just completed purchase of the tickets: $2,273.94! Langston and I leave early June 10th and return late June 12th.

Thank you! Thank you! Thank you!