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Most people in Michigan have heard about DIPG, an incredibly rare, inoperable tumor in the most sensitive part of the brain, which nobody has survived.
It strikes 150-300 people a year - predominantly children under the age of 10. There is no treatment, and patients generally are given a life expectancy of six to 16 months.
Cases - Date - Chad - Carr - Grandson
One of the most widely reported cases to date was that of Chad Carr, grandson of Lloyd Carr, the beloved former football coach for the University of Michigan.
Chad was diagnosed with DIPG in September 2014, days before his fourth birthday, and he passed away 14 months later, despite undergoing 30 rounds of radiation.
Story - News - State
His story became household news across the state.
So there was no beating around the bush last December when then-14-year-old softball player and homecoming princess Sophie Varney and her parents - sat in the same University of Michigan clinic that treated Chad - received the news that she, too, had DIPG.
'It - Something - Way - Mark - Varney
'It's not necessarily something you experience in a real way,' Mark Varney, Sophie's dad, told DailyMail.com.
'It was second by second by second. You're hearing this news, trying to pay attention to what's in your own head, looking at Sophie a bit, telling myself, "keep your sh*t together for a minute."'
Sophie - Mom - Kim - Phone - Googled
Sophie's mom, Kim, took out her phone, Googled 'diffuse intrinsic pontine glioma', and handed Mark the phone.
'I mean, you look at the stats and it's like, oh my God,' Mark said. 'It was at that time that my heart really sunk. It was just like... whatever cliche you want to put on it. I felt like the weight of the world was on my shoulders. '
Oncologist - Phone
The oncologist saw they were looking at the phone.
'He said “oh did you find something on there?” And I said “...yep”. He knew. He mentioned Chad Carr. I had heard of...
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