Hi & thank you for coming to our sons page. My husband Joel & I are holding a fundraiser for our 18 month old son to help his lifelong journey with FOXG1 Syndrome.

“FOXG1 is characterized by impaired development and structural brain abnormalities. This severe condition is characterized by seizures, inability to control body movements, and lack of speech. While the spectrum of abilities is quite broad depending on the exact genetic mutation, many of our children cannot walk or talk, and they struggle to communicate their most basic daily needs.”

Our son received his diagnosis in April after his third trip to Valley Children’s Hospital via ambulance after experiencing multiple episodes of seizures. He is one of 500+ of those diagnosed in the U.S. & as the description of FOXG1 says above, there’s a wide range of severity that affects every child differently. As of today, Jakey does not crawl, walk, bear weight on hands & knees, has oral aversion as he gags at the sight of a spoon or a cup & can only tolerate to be bottle fed. He has uncontrolled seizures (some in his sleep) & has CVI (cortical vision impairment) with atrophy (tissue death) in the optic nerve. We don’t know where his vision is as of yet but we know he sees us, we just don’t know how clear.

His insurance covers therapy for his needs, but is very limited. Due to the virus, most educational therapy appointments have resorted to zoom so he has fallen behind, & even those appointments are scarce. In person physical therapy is once a week sometimes once a month, depending if we are able to get squeeze him into the schedule. We have requested a referral for feeding therapy but it’s been a month since we’ve heard anything back & even then they don’t have appointments for months out.

Our goal is to provide Jakey with the best intense physical therapy along with feeding therapy aside from what insurance will eventually provide. The time is now to get him the best help & we don’t want to prolong it any further. We pray that one day he will be able to sit up on his own & play side by side with his brother who he adores so much.

Don’t take the milestones of your children for granted. It’s the littlest accomplishments for anyone else that have become huge for us. I dream of the day that I can look over & see my son eating & making a mess with the meal on his tray or holding his own bottle. To see him sitting next to his brother playing cars on the floor.

This page was hard for us to make. As parents no one wants to ask for help, but we’ll do that for him. We’ll do that for his intense therapy that we believe would help him. I had to step away from my nursing career last summer to make sure we had all of the early interventions given to him & to make sure he was properly looked after. So believe us when we say THANK YOU to everyone who has asked for us to create this account so they could donate & THANK YOU for continuing to keep our family in prayer. We won’t give up.

Many blessings to you in return

-The Arroyo Family