Closing out 2023…

Dec 19

It was finally performance night!

She picked out her fancy red velvet dress and her white dress shoes and white tights.

She was eager to get there early, and anxiously awaited to find us in the crowd to wave and smile big once in place on the riser up front.

There were tons of other parents all there doing the same.

The room was filled with chaos, and I recall it being quite warm in there too, as we all packed the elementary school gym out to the max.

The kids had practiced for weeks and were delighted to finally perform for us all.

There they were – all 100+ kindergartners—dressed in their Christmas best, wearing a lone jingle bell around their neck for one of their songs – the long-awaited and much anticipated kindergarten Christmas performance.

Their smiles lit up the room. Their energy and enthusiasm for all things Christmas on full display.

They sang. We clapped.

We smiled at the cuteness, snapping pictures and capturing videos so we could always remember this occasion.

We all did.

It was a special night.

Our kid’s first big performance at school.

Of course, we thought, there would be many more, but this would be the first. Years down the road we could compare and look back at how much they have grown and how much more mature they’d look.

As cute as they all were, we were there to see her perform.

That super cute little girl in the second row, with that darling grin who was all decked out in her best-chosen fancy attire.

She knew it too, throwing us extra smiles, subtle waves and winks throughout the night.

We had NO WAY of knowing then, though, that in just over six months’ time, her life, and ours, would forever change.

In a school of just over 700 students, that little one in that red velvet dress, Avery, would be diagnosed with terminal brain cancer just as she completed her year in kindergarten.

Our precious daughter, so full of life and joy. So eager to do all the things and achieve her dreams.

There would no longer be performances to film or the traditional memories to be made with each new grade-school year. This was it, as a healthy, carefree happy family.

Avery would barely make it to her first-grade Christmas performance, where she sat paralyzed in a wheelchair, fighting for every new day after, until her body could no longer sustain her life as the tumor, the cancer and its symptoms invaded her completely.

They say that each year in the United States alone, 300-450 kids are diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma).

I am here to tell you that no parent or family familiar with DIPG wants to be told this disease is rare.

It is not.

It happened to our child from out of nowhere. It is why we can’t sit around and continue to let this happen to other families.

There is much to be done to make this outcome better and filled with more hope.

There should be hopeful treatments, not just palliative care, the only option Avery was given

There should be life extension, not just a timeline of impending death in 6-9 months, post diagnosis.

I am happy to share that there have been some advancements made with this disease in the last few years—new trials, new potential meds and such a BIGGER community (or researchers and fellow foundations) who are working together to create even more change.

We are grateful for that teamwork and that our foundation has been involved in that change.

But we’re not there yet. DIPG hasn’t been eradicated, it still looms, lingers and destroys.

Which is why we are so committed to fighting back, to fight like Avery did, to fight like other families of DIPG fighters, to give other kids the chance that our own didn’t have.

As 2023 comes to close, please consider donating to our cause to find a cure for DIPG. Help us fight back.

Children and families are dependent on family foundations to help drive this change, as the government isn’t prioritizing this.

We are honored to be doing this hard work for others now—because we know.

We know more than we want to and that requires much responsibility.

Its why we keep pushing ahead, doing what we can to influence more options, hope and treatment.

We do it for the little girl in the red velvet dress, who’s only hope and dream was to get on the stage at her elementary school and sing her heart out with her family watching. Who a year later, with cancer ravaging her body, sat in a wheelchair, off to the side of her classmates, hoping her body would make it through Christmas.

We do it for Avery.

Help us in our fight for Avery and every other child who fought this horrible monster.

Avery didn’t quit.

We won’t either.

#AveryStrong

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You can donate today, directly on our webpage: https://averystrongdipg.org/donate

OR you can donate on these sites!