There are moments as a parent that change you forever.

For me, it's watching my seven-year-old daughter ask why she keeps getting sick and hurts so much... knowing I don't have an answer.

It's watching her wake up with severe pain, another fever, sickness, another ear infection, another round of antibiotics, a wondering how much more her little body can take.
 
It's hearing doctors say she needs help while being told by insurance to wait.
 
No parent should have to watch their child slowly lose pieces of their childhood while fighting for the treatment their doctors believe they need.
 
But that's exactly where we are.
 
Over the past several months, Valerie's health has continued to decline. What started as what we thought were foriwng pains.. has become something far more complex.
 
She has battled infection after infection, spending much of the last year on antibiotics and daily pain medication. She lives with chronic pain, muscle weakness, visible muscle atrophy, and a leg length difference. Her strength continues to decrease, and every new illness seems to take a little more from her than the one before.
 
These aren't isolated symptoms.
 
Together, they paint the picture of a little girl whose immune system is struggling in ways doctors are still working to understand.
 
Specialists in Idaho, Utah, and Philadelphia have all become part of Valerie's journey. Along the way, they discovered a rare genetic mutation, confirmed Common Variable Immunodeficiency (CVID), and found signs that her immune system is severely dysregulated. Every specialist sees the same thing:
 
Something is wrong.
 
The challenge is understanding exactly how all the pieces fit together before even more damage is done.
 
Her doctors believe IVIG is medically necessary to help replace the antibodies her body cannot make on its own and reduce the constant infections that continue to interrupt her life.
 
Yet despite everything they see.the diagnoses, the recurring infections, the antibiotics, the recommendations from specialists, and the child sitting in front of them..Our insurance company continues to deny coverage for that treatment. They continue to focus on a single laboratory value instead of the full picture of a little girl whose body is clearly struggling.
 
While paperwork is reviewed and appeals are denied, Valerie doesn't get to pause her illness.
 
She still gets sick.
 
She still hurts.
 
She still misses out on parts of childhood that so many families take for granted.
 
And we continue to fight.
 
Every appointment. Every appeal. Every phone call. Every flight to another specialist. Every test that brings us one step closer to answers.
 
The financial burden of this journey has become overwhelming. Between travel to specialists, hotels, rental cars, missed work, medications, medical expenses, and costs insurance won't cover, we're carrying more than we ever imagined.
 
But we will never stop showing up for our daughter.
 
We're asking for your help because we believe Valerie deserves every opportunity to get the care her doctors are fighting for.
 
Your donation helps us continue traveling to the specialists searching for answers. It helps us continue this fight while insurance delays the treatment her medical team believes could make a meaningful difference. And if you aren't able to donate, sharing Valerie's story is another incredible way to stand beside our family.
 
From the bottom of our hearts, thank you for believing in Valerie.
 
Thank you for giving our little girl hope.
 
And thank you for reminding us that we are not fighting this battle alone.
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Anonymous

Alisa Guynn

Veena R

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Cheryl Steele

Help Valerie Get Rare disease treatment

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