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Sunny's Law

$48,673 of $40,000 goal

Raised by 350 people in 1 month
Our 7 month old baby boy Sunny has been diagnosed with Krabbe Leukodystrophy- a degenerative and terminal brain disease. About 1 in 125 people are carriers of Krabbe, and it turns out my husband and I both carriers, so we had a 25% of having a child with this disease. Sunny was a typically developing baby- advanced in some areas even. Around 4 months we noticed he was having spasms and losing milestones. Treating the spasms ultimately lead to getting genetic testing where we found last week he has Krabbe.

To say we are devastated is an understatement, we had so many hopes and dreams and ideas for what our future looked like. Even before we knew he had this disease it was rare for the three of us to be apart. I can confidently say we have deeply cherished every day of Sunny’s life and will continue to do so.

We are not sure how long we have with Sunny, but most likely not more than 2 years. Our main goal is to treat his pain and make sure he comfortable & surrounded by love. While he is stable we want to continue to show him the world and live his life to the fullest. Oliver and I have started a bucket list for Sunny which we will share here.  We will use this page to help cover some of his medical costs and to allow us to spend our last moments with our baby.

Our other mission is to bring awareness about this disease. There are only 6 states in America that test for Krabbe on the newborn screen at birth. If treated at birth Krabbe victims can have a significantly better outcome and live a long life. We want to push for legislation to get this on the test for California as it could have saved our son’s life and the lives of many other babies with Krabbe Leukodystrophy.

We greatly appreciate the love, support, and strength given to us at this time. While we have been free-falling down a black hole of despair that I’m not sure I will ever recover from, we try to find moments of peace. We have jokingly (I was never really joking though) referred to Sunny as ‘God’s Perfection’ since he was born. And that’s just what he is. He has come in to our lives as an angel to only seek and create love. My husband and I firmly believe that quality of life is not dependent on duration. Oliver and I want to hold onto that peace as we continue to envelop Sunny with the nurturing love we welcomed him with as our baby spends his final moments with us in this body.
Here are some of his bucket list items:
-boat trip to Catalina
-swim in hot springs
-hike in the old growth redwoods (as much as possible)
-sleep on a bed of rose petals
-listen to gospel choir service
-have a sleep over with friends
-go camping
-summer bbq and bon fire
-play in the rain
-have a best friend(s)
-do a finger painting
-have a first kiss (other than mom and dad kissing me )
-go to a Humboldt crabs baseball game
-ride a train
-go on a road trip
-big birthday bash with a jumper
-ride a wave
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This weekend was busy! We were able to spend some time with the old growth redwoods in Prairie Creek National Park as well as go to a Humboldt Crab’s baseball game. After an emotional yet fun father’s day weekend we are pooped.
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Past few days at home have included visits from friends, crying, naps in the forest, more crying, and hikes ❤️
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We are ready to hit the road! Sunny got the okay from post-op check up and we can FINALLY head home after fleeing to Southern California in February when we first noticed symptoms. For the last 4 months feels like we have spent more time in the hospital than out. So this is huge for our family. We are trying to stay present and soak up every moment as we create more memories with Sunny- I think having a break from hospitals, doctors, & hospice for the time being will help.
Sunny’s all ready to hit the road!
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Less than 24 hours out of the hospital and Sunny had his first tube feeding at the beach! Feels good to be outside & hopefully done with the hospital for a while. Oliver and I have read each message with tears flowing down our cheeks. We love you all— even to those we haven’t met, we love you. I now truly know the phrase ‘thank you from the bottom of our hearts’ ❤️
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$48,673 of $40,000 goal

Raised by 350 people in 1 month
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MS
$300
Marianne Shriver
16 hours ago
NV
$300
Nora Vince
3 days ago
RK
$50
Ryan Kolanz
4 days ago
DR
$100
Dora de la Rosa
5 days ago
$1,000
Anonymous
5 days ago
CT
$50
Chelle T
6 days ago
BG
$50
Brittany Gray
6 days ago
BH
$100
Betsy Harrigan
6 days ago
LY
$100
Lisa Yamaguchi
7 days ago
ZO
$100
Zoe Byrne Ogner
7 days ago
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