Jaxon's Journey with Sturge-Weber

27589172_15181322580_r.jpegWelcome and thank you for supporting Jaxon's Journey!

Jaxon is a smart, sweet, loving and happy 3 -year old boy that is OBSESSED with firetrucks and all things that go! He loves school, karate, playing with his friends and cousins, Elmo, singing and dancing but most of all he LOVES his Mommy, Daddy, big brother Matthew and new baby brother, Cruz!

Jaxon was born on February 27, 2014 with Sturge Weber Syndrome (SWS). It is a neurological disorder marked by a distinctive port-wine stain on his face, from his forehead to his eye on his left side. Port-wine stain is a cluster of blood cells near the surface of his skin. Port-wine wouldn’t be a big deal (other than physical appearance), but his is close to his brain, causing him to have seizures and any type of stress on his body will send him into a seizure. 

At just 6-months old Jaxon experienced his first set of seizures and was hospitalized for 2 weeks. The left side of his brain was affected and he lost all movement in his right side. As you can imagine, their whole world was turned upside down. They were terrified of what life would be like for Jaxon.  But Bo & Andrea didn't give up, they did everything possible to provide him with a normal childhood. Jaxon is such a joy to be around and he truly is our real-life Superhero!!!

Last week, Jaxon had a seizure & lost use of his right side. My brother and SIL took him to the hospital thinking he had a stroke. But the MRI and CT scans came back negative. However, they can’t find what’s going on. He went home a few days later, but still hasn’t been able to walk or use his right side. He hasn’t been eating much and sleeping a lot. So not only all of this isn't stressful enough, they have a newborn at home. Literally, Andrea & baby Cruz came home from the hospital in the afternoon & Jaxon went to the hospital that night.

Update: Last night he was admitted back to the hospital after an hour-long seizure. They are currently running tests and meeting with his neurology team at Children's Hospital of Los Angeles.
Please pray for him. Pray for answers so that they can at least know what course to take. He’s turning FOUR later this month! 

This fund is set up to help with medical costs, laser treatments, weekly physical, occupational and speech therapies, daily medications all of which insurance does not fully cover. Bo is working full-time while Andrea is a stay-at- home mom, she's been focused on Jaxon since the day he was born and trying to give Jaxon the quality of life most of us have. Her days & weeks are planned out from morning to night. Jaxon has therapy 3, 4 and sometimes 5 days a week along with doctor visits. Bo & Andrea's love for Jaxon has helped him reach new milestones every single day. They are constantly researching and supporting causes for children with SWS and Epilepsy and brought so much awareness to this disease. 

Bo & Andrea are two of the most thoughtful, caring and selfless people. They have helped so many others without asking for anything in return and it is our turn to help! 

For more information about Sturge Weber Syndrome please visit https://en.m.wikipedia.org/wiki/Sturge–Weber_syndrome 
If you would like to help and donate to the SWS foundation, please visit http://sturge-weber.org to help fund a cure.

Thank you all so much for your love and support! It means the world to our family!

Donations

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  • Anonymous 
    • $50 
    • 38 mos
  • Erin Powers 
    • $300 
    • 38 mos
  • Anonymous 
    • $200 
    • 38 mos
  • Janet Shields 
    • $50 
    • 38 mos
  • Kaitlin Williams 
    • $100 
    • 39 mos
See all

Organizer and beneficiary

Bethi Perrott 
Organizer
Los Angeles, CA
Bo Pham 
Beneficiary
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