Have You Ever Heard of Diffuse Intrinsic Pontine Glioma?

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Shortly before Christmas, one of Jim’s co-workers received some devastating news about his 6 year old daughter, Beatrice. She was diagnosed with a life-threatening brain tumor known as “Diffuse Intrinsic Pontine Glioma”. This news came as quite a shock, since Beatrice was an active and healthy 6-year old only days before the diagnosis. Immediately following the diagnosis, she was hospitalized and began a series of rigorous treatments at Children’s Healthcare of Atlanta and Scottish Rite. After a difficult month of treatments and rehabilitation, Beatrice is finally back home with her family, but this strong little girl still has a long, tough battle ahead of her.

Taken directly from her blog…..

Beatrice was diagnosed with DIPG, diffuse intrinsic pontine glioma, a rare, aggressive and almost always terminal form of brain cancer. The diagnosis was made on December 17, 2011. We took her to the local ER because we thought she was dehydrated with the flu. That’s how fast and sneaky the symptoms are. We had no idea she had a tumor. The situation was so bad that I was air lifted in a helicopter to a local children’s hospital within 90 minutes of our initial ER visit and she had to have an emergency tube put into her brain to prevent stroke. If I’d put her to bed instead of calling the doctor, like I seriously considered, I don’t know what would have happened that night.

Four weeks of hospital care and physical rehabilitation and she’s still not 100%. As of today Bea can walk but not run. She can’t walk up stairs by herself. Her balance is off. Her short term memory isn’t 100% either, which frustrates her because she’s very smart and usually loves to talk about her day. She can recall with prompting but without is difficult.

She is undergoing radiation and our hope is that all of these life skills will come back with healing and therapy.

However, this terrible disease that she has always comes back, sometimes very, very quickly. It could be weeks, months or a couple of years with just the radiation.

So, we’re looking into clinical trials and have found a few that are promising. The purpose of this blog is two-fold. One to tell

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her story from my point of view, the mom. Some stories are going to be full of heartache and aren’t going to be easy to read. Others will be uplifting. That’s the ups and downs of having a child with a terminal illness. I’m hoping, praying, thinking, whatever it takes… to erradicate this disease from her body. It may sound insane but I would love for someone to tell me that it’s chronic, not terminal. That would be music to my ears.

They currently have some fundraising efforts going on:

1. An Art Shop on Etsy: www.helenzigafineart.etsy.com – Buy original artworks by Beatrice and her mom. Bea is also selling custom drawings. Buy one of those and you can ask her to draw something for you!

2. Donations: www.sweetbeafund.blogspot.com – This is a new blog that they’ve started that is a fundraising site and a journal. The donations can be paid via Paypal. The account is a not-for-profit so the percentage taken from donations is very low.

3. Fundraisers: There are 2 fundraisers that are being worked on by friends of ours in Marietta. The dates and details are not yet available. One is a Zumbathon and the other will be a night of dining at Red Sky. There could be others and we will keep you posted on those as they come up.

If there are any other ways you can help this family, please consider doing so. Does your business donate a percentage of proceeds to a non-profit? Consider this one.

I don’t personally know this little girl, but Jim knows his father. I can’t imagine what they are going through and how their lives have been turned upside down without warning. Please head over to their blog and follow the updates on Sweet Bea and help spread the word about their fundraising efforts.

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