To Help Sweet ZoeJane Battle DIPG

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Don't Let me Down

by Neal Middleton and Spencer Nielsen

Our Story

 

We never thought this story would be ours, that a simple life could turn into a fight for life.

Finding out your child has brain cancer is devastating. Learning you do not have the resources to gain access to possible treatment without relying on others is torture. We have learned even an ocean is filled a drop at a time–that no obstacle is too large that cannot be fought together. We  can each choose to be a part of the solution. We do not need to wait for someone else. Every time we share Zoe’s story, give a dollar, create our own fundraiser, inspire and educate the community about DIPG, we come closer to winning the war for all children fighting DIPG today. We will never give up hope. We will never stop the fight.

Devastation

December 29th 2017 was a day that would change everything for the Betkers.

DIPG – A 4 letter word no parent should ever hear.

Diffuse Intrinsic Pontine Glioma – A Grade IV aggressive brain tumor, found almost exclusively in young children, resided deep in the brain stem of their 8-year-old daughter ZoeJane.

A monster in her brain that nightmares are made of.

This area of the brain controls the bodies core functions, eating, seeing, walking, and breathing.

Survival Rate: 0% the most fatal of all childhood cancers and a prognosis of 6-9 months.

Treatment: None.

Only palliative radiation is given to shrink the tumor and then a waiting game of how long until the tumor begins to grow again.

Diagnosis: The end.

The end of the simple life they had built together. Life would never be the same.

Family

If you ask ZoeJane what her favorite color is she will answer “Rainbow Sparkle”, which truly captures the essence of who she is.

Everything.

She wants to do and see everything life has to offer.

She hopes to grow up to be a singer, or an actor, or a doctor, or all of them.

Like any 8-year-old, her dreams are as unlimited as her imagination.

Her mom and dad first met 21 years ago. He took a job as a bus driver sixteen years ago, and they began to build their life together. Through all of the storms of life they were inseparable, and at the heart of everything– their children–two boys and their only daughter, ZoeJane.

They choose camping over flying, barbecuing in the backyard over fancy dinners out, and happiness for them has always been a quiet night at home with each other.

Love

Love runs deep, an unbreakable bond that connects us all together.

An army of love quietly began to build as word of Zoe’s diagnosis spread.

Family, community and even strangers began to wrap their arms in a tight circle around ZoeJane and her family.

And this army went to work to find hope, even in the unlikeliest of places.

Journey

There was the first man to walk on the Moon.

The first time a heart began to beat transplanted in another body.

The first successful protocol developed for Leukemia

There is always a first. There is always a hope.

ZoeJane’s story is a story of hope. She can be one of the first.

Advances

Advancements in treatment are on the horizon, and we aim to gain access to the most cutting edge options for Zoe.

This means traveling across the country for clinical trials, supporting research funding, and even traveling the world if needed to find a solution.

What would you be willing to sacrifice if it were your child?

What would you give to see your child grow up?

 “Don’t Let Me Down” was co-written by Neal Middleton and Spencer Nielsen for Sweet ZoeJane’s DIPG battle.  All proceeds will go directly towards treatment and  living expenses for the Betkers while they are on this journey.