In October, we asked people to help us do something that felt almost impossible.

Both of our children, Poppy and Oliver, were diagnosed in July of 2025 with Sanfilippo Syndrome Type B — a rare, devastating, progressive childhood disease often called “childhood dementia.” There is no approved treatment, no cure, and no time to wait.

By October, we had found a promising Enzyme Replacement Therapy and were fundraising toward a possible Expanded Access Program that we believed could potentially treat both of our children. We were very honest that nothing was guaranteed, but it was the most urgent path in front of us.

We needed $3.8 million by December 1, and another $1.7 million by spring.

Instead, families, friends, strangers, churches, companies, and donors from all over showed up in a way we still can’t fully put into words. Across the country, a handful of other Sanfilippo B families came together to raise the funds. Incredibly, the full $5.5 million was raised by December 1, and additional major funding followed soon after.

Because of that, something extraordinary happened.

That fundraising effort didn’t just support one possible treatment path. We didn't only raise the $5.5 million needed for the EAP. Over $10 million was raised from that initial fundraising push. It helped move forward multiple paths, including the newly announced Paris program we call Project Poppy.

Project Poppy is not just for our daughter. It is named for the child going first, but the goal is to open the door for many more children with Sanfilippo B.

And the money raised last fall is now helping make that possible.

When we began fundraising, we were aiming at the most urgent treatment path in front of us. But because people gave so quickly and so generously, that effort became bigger than one path. It created momentum. It moved more than one program forward. It helped turn “someday” into something real.

We want every person who donated, shared, prayed, gave sacrificially, or helped carry this story to understand: you are part of this.

Whether your gift helped fund the first urgent program, the Paris program, or the momentum that made both possible, you helped build the path our children are now walking.

Now we need help getting them across it.

Treatment is moving forward, but it is not available to Poppy and Oliver today. There are still 8-12 months of continued disease progression and damage between where we are now and where we desperately need to be.

And Sanfilippo does not pause while we wait.

Poppy, especially, is at an age where every month matters. Our goal now is to do everything humanly possible to protect her brain, support her body, reduce inflammation, preserve skills, and slow regression while we wait.

That is why we are starting this GoFundMe.

This fundraiser is not replacing the treatment fundraising from last fall. It is not a second version of the same ask.

It is for the waiting — the months between treatment moving forward and treatment reaching our children.

Funds raised here will help cover therapies and interventions we are pursuing now, including:

• MUSE cell therapy, which can cost thousands to tens of thousands of dollars per month

• Home laser/light therapy equipment and ongoing clinical support

• Intensive therapy programs and continued therapy when available

• Travel expenses related to appointments, treatments, and intensives

• Anti-inflammatory and supportive care tools recommended by providers

• Other out-of-pocket interventions aimed at helping Poppy and Oliver stay as strong and stable as possible

These therapies are not cures. They are supportive interventions we are pursuing under professional guidance because we are trying to protect Poppy and Oliver’s bodies and brains while we wait for treatment.

We have already invested heavily ourselves, including two rounds of MUSE treatments, purchasing a home therapy laser, and pursuing every free or reduced-cost consultation and intensive we can access. But the reality is that many of the things we believe may help are not covered by insurance, not funded by foundations, and not tax-deductible.

But they are promising and available to us right now, and right now matters.

We never want anyone to feel pressured to give. So many people have already done so much. We mean that with our whole hearts.

But for those who have asked how to help now, this is the clearest answer:

Help us keep Poppy and Oliver as strong as possible until treatment reaches them.

Help us protect the ground we still have.

Help us get them across the bridge you helped build.

Thank you for loving our children, believing their lives are worth fighting for, and helping us carry hope forward one step at a time.

With love,

Megan and Kyle

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Timeline

July 2025

Poppy and Oliver are diagnosed with Sanfilippo Syndrome Type B.

October 2025

We begin fundraising for an enzyme replacement Expanded Access Program we believe may be the fastest available treatment path.

December 1, 2025

Families, donors, and foundations raise the full $5.5 million needed for that effort far ahead of schedule.

February 2026

We discover the Paris gene therapy program — now called Project Poppy — and learn that approximately $4 million is needed to move it forward. At the same time, $4 million from the original fall fundraising movement reaches the National MPS Society. Because of the incredible generosity of the Type B community fundraising efforts, the overflow of funding was able to fully fund a second program — Project Poppy.

April 2026

Project Poppy officially moves forward! The National MPS Society announces the program publicly and grants the $4 million toward the Paris gene therapy program.

Now

Treatment is moving forward, but Poppy and Oliver still have to wait. We are pursuing out-of-pocket therapies and supportive interventions to help preserve function and slow regression while we wait.

Our goal

To help them make it to treatment as strong as possible.

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What this fundraiser will help cover

MUSE cell therapy

MUSE is one of the main supportive therapies we are pursuing right now. It is expensive, and depending on frequency, costs tens of thousands of dollars per month. Our hope is that it will help support Poppy and Oliver’s bodies and minds during this critical waiting period.

Laser/light therapy

We recently purchased a home therapy laser so we can do consistent therapy at home. We currently have three months of consultation support included, but ongoing guidance and care will become an additional cost.

Therapy intensives

We are pursuing intensive therapy opportunities when available, including one free week of intensive therapy. If we see meaningful benefit, continuing that kind of support may become another major expense.

Travel and related costs

Many appointments, evaluations, and treatment opportunities require travel. These costs add up quickly, especially while also caring for two medically vulnerable children.

Supportive care

We are also investing in anti-inflammatory supports, nutrition, supplements, and other tools recommended by providers to help their bodies function as well as possible.

We will continue sharing updates so donors can see what their gifts are helping make possible.

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Follow along our journey:

Facebook: @poppyandoliverkempf

Instagram: @poppyandoliverkempf

TikTok: @curepoppyandoliver