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Sunny's Law

$51,898 of $40,000 goal

Raised by 370 people in 3 months
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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We celebrated Sunny’s 10 month birthday today! Thank you for all the well wishes and keeping our family in your prayers.
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We celebrated Sunny’s 10 month birthday today!
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Thank you all for the outpouring of love & support. Here is a short video from a walk we took with Sunny the other night. We aren’t sure how much of his vision is intact and he also keeps his eyes closed most of the time so we try to engage and stimulate Sunny with sounds and smells. Here we are going on a ‘smell walk’, turn up the volume and you can hear him sniff.
Thank you for all
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Pool parties, sleepovers, & kisses. June has been a beautiful and emotional month. Grateful for the love and support we have been receiving.
Sleepover with Mila was so much fun!
Kisses from Niamh
Handprints in the fresh concrete.
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$51,898 of $40,000 goal

Raised by 370 people in 3 months
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