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Vivian's Hope

$24,615 of $33,000 goal

Raised by 249 people in 20 months
Created October 3, 2017

The news that Vivian, our beloved 11 year old daughter, has DIPG, a terminal brain condition, is absolutely devastating. We were told at diagnosis that she would only make it for another 9 months.

There is no known cause and no cure for DIPG--making this something that could happen to any innocent child.

We are determined to do everything possible to help find a cure while ensuring that our darling maintains a high quality of life.

With the utmost grace and grit, Vivian has begun her fight to overcome this nighmare. We have resolved to enjoy each moment with her, from her unique sense of humor and gusto for sticker projects to the love that shines through her beautiful brown eyes every night when we sing our sunshine to sleep.

Beyond the conventional palliative options are some promising rays of hope, but all are quite costly ($30,000+ per treatment is standard, with no insurance coverage due to the experimental status) so we must start planning and saving up now to give Vivi the best possible chance.

Since every day with Vivi is a gift, we want to make all her dreams come true. Gwendolyn Gomez will act as the beneficiary on behalf of our daughter.

From playtime with koalas, pool parties and RV camping trips, your compassionate support to this campaign will allow us to make this time extra special + support us in our quest to beat the odds.
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I’m devastated beyond words to report that Vivian passed on Sunday after fighting DIPG with the utmost strength & grace for the past 17 months.

Her brain went to Stanford to support research to cure DIPG.

Thank you all so much for all your support & kindness.

Please keep her brother Diego in your thoughts & prayers.

Love
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Greetings Friends & Family,

Happy New Year! 2019 has been a bit challenging for Vivian thus far, but our days are still filled with joy, hope & gratitude.

Vivian has now been living with DIPG for 16+ months.

It’s been nearly 5 months since she last walked or was able to use her right side.

Unfortunately, Vivian now experiences periodic tremors & left side weakness which have prevented her from engaging in some key activities such as feeding herself. She is no longer able to type the Instagram posts & text messages that she used to relish.

Fortunately, Vivian remains mostly pain free & can still enjoy eating, one of life’s great pleasures. She virtually travels the world observing the culinary adventures of her favorite YouTube vloggers, & looks forward to her weekly music therapy & reiki sessions.

Here is a photo taken during the last week during the visit of our dear friends Claudia & Magaly, who flew from Mexico City to spend time with her.

Vivian is so full of love & vibrant life despite the many cruel challenges that she faces each day. Her indomitable spirit is a marvel to behold.
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Autumn greetings, friends and family. The holiday season kicks off in our household with Vivian’s late September birthday before swinging into higher gear with Halloween, Thanksgiving and beyond!

Change has been in the air for Vivian this season. Sadly she lost the ability to stand late last month and was assigned to hospice care. Her speech is garbled and sometimes she can’t talk at all. Her right arm and right leg have full feeling but are mostly unresponsive.

We had a terrible scare recently when Vivian couldn’t swallow—she asked to go to the hospital and didn’t want to go home because surely at the hospital they would be able to make her better. She got sent home with an NG tube and a “there’s nothing more we can do.” 

Now my sweet pea knows that the hospital and emergency services can’t offer her anything better than what she’s getting here at home with hospice. A cruel and unacceptable fact, but sadly true.

On the upside we now have a wonderful hospice team who can come to our home at any time, have provided some essential medical supplies and are also giving special at homes services to Vivian such as reiki, massage and music therapy. 

I can’t thank you enough, those who have continued to donate to offset our many unexpected medical costs, you who have sent sweet gifts and greetings to brighten Vivian’s days, and my work colleagues who have offered unbelievable support at every turn.

No one knows what the future holds or how long this latest period of relative stability will last. As you can clearly see in the attached photo from today, Vivian continues to fight bravely, is happy and refuses to let any physical limitations keep her from enjoying life. 

#NEGU (Never Ever Give Up)
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After 7 months of “stability” we received the unfortunate news this week that Vivian’s illness is no longer so. Hearing those words and seeing the MRI were devastating moments rivaled only by the horrific diagnosis initially received back in September.

Among other things, this means that we no longer qualify to continue her clinical trial and must quickly devise new treatment options since the current ones have partially or wholly failed to stave off the ruthless killer that is DIPG.

However, Vivian is still acting, feeling and appearing the same as before, which fills me with boundless gratitude. Since this could change any day now, it’s more crucial than ever that we spend all our time keeping her happy and showering her with love.

Next steps involve experimental treatments with low to no side effects. Unfortunately, some are not covered by insurance so if you’re able to continue to provide any amount of support towards the monthly costs of these medicines it would be greatly appreciated.

Despite this setback we remain committed to Vivian’s recovery, and thank all of you for the kind words, prayers and love that have helped make our outcome positive so far.
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$24,615 of $33,000 goal

Raised by 249 people in 20 months
Created October 3, 2017
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