✨ Meet Aspen

Aspen is a brilliant, science-loving, art-enthusiast, book-obsessed 13-year-old who has spent most of her life fighting a rare immune disorder, HLH (Hemophagocytic Lymphohistiocytosis), caused by XIAP deficiency. She is one of only 3 known females in the world with her mutation. She survived one bone marrow transplant as a young child, but now—after years of complications, setbacks, and experimental treatments—she is preparing for a second bone marrow transplant at the start of the new year.

Despite everything she has endured, Aspen still shows up with quiet strength, quick wit, and a heart that can soften anyone. She is also a huge Taylor Swift fan and blasts T Swift in every hospital room she stays in.

Why Aspen Needs Fertility Preservation Now

Before Aspen begins transplant conditioning and chemotherapy, she met with a team of physicians to discuss what her future may look like. She has expressed that she deeply wants the chance to be a mother, which means she has to make the decisions to set this in motion at the age of 13. To give her the best chance, she needs 1-2 egg retrievals and an ovarian removal for one ovary.

The bone marrow transplant process will almost certainly cause permanent infertility.

To give her a chance at future biological children—if she chooses that someday—she needs to begin the egg-retrieval medications this Thursday. This timeline is incredibly tight, and everything has to be paid up front.

Since her relapse, we have spent the past four years doing everything we can to save Aspen. Clinical trials, multiple hospitals, nearly weekly 14-hour drives from our home in Virginia to Ohio, hotel expenses, gas, food, non-covered procedures and medications, etc. We have shouldered the financial burden of medical debt and planned as far in advance as we could, but this exorbitant out-of-pocket cost was truly not on our radar and we have maxed out our options.

We are putting our pride aside and Aspen's future first and humbling realizing that we can no longer do it alone if these procedures are going to be an option for Aspen.

For only fertility preservation, our total out of pocket costs are estimated to be around $50,000 over the next three months, but here is the breakdown for the immediate need:

Cost for the first cycle: $15,000

This includes:

Stimulation medications (estimated at $6-8,000 due this week)

Specialist monitoring

Anesthesia

Retrieval procedure

Embryology & lab handling

Short-term storage

Insurance has denied coverage because Aspen is a minor and her need is tied to transplant and her rare disease—an all-too-common gap in coverage. Furthermore, most foundational grants do not apply to her because of her age and/or diagnosis, so assistance options are extremely limited to non-existent.

Why the Situation Is So Urgent

As if preparing for transplant wasn’t enough, Aspen is also facing a new and frightening complication. She recently developed two thyroid tumors which were removed last week in a hemi-thyroidectomy. Genetic testing revealed a mutation associated with a very high chance of malignancy, and we are currently awaiting final pathology results.

If the tumors are malignant and aggressive, she will need the other half of her thyroid removed—and possibly more treatment—before her bone marrow transplant. This makes the fertility preservation timeline even narrower. We cannot delay, or the opportunity may be permanently lost.

Why We're Asking Outside Our Immediate Community

We want to be transparent:

We are not asking our local community, family, colleagues, or friends to contribute—many of whom are already navigating financial stress.

If you are someone moved by Aspen’s story or someone who believes every child deserves future choices, your help means everything to us.

How Your Gift Helps Aspen

Every dollar raised goes directly toward:

Fertility medications

Medical monitoring

Retrieval procedure

Anesthesia

Lab work & embryology

Immediate storage while she prepares for transplant

This fund supports one purpose only: preserving Aspen’s future.

From Aspen’s Mom

Aspen has grown up in hospital rooms, research clinics, and infusion centers. She never asks “why me.” She just keeps going—with grace, humor, and stubborn hope.

I want her to have a future full of choices. Illness has already taken so much from her. We’re trying to protect this one piece of her future before treatment takes the rest.

Thank you for reading, for caring, and for holding space for our girl.

With gratitude,

Brittney (Aspen’s mom)

*Aspen has spent her entire life making her own sunshine in the darkness. So with that, I'll leave you with a piece of Aspen's current fight song, "Opalite" by Taylor Swift:

It's alright

You were dancing through the lightning strikes

Sleepless in the onyx night

But now the sky is opalite

Oh oh oh oh, oh my Lord

Never met no one like you before

You had to make your own sunshine

But now the sky is opalite

Oh oh oh oh oh

This is just

A storm inside a teacup

But shelter here with me, my love

Thunder like a drum

This life will beat you up, up, up, up

This is just a temporary speed bump

But failure brings you freedom

And I can bring you love, love, love, love, love

Don't you sweat it, baby