this past Sunday's guest, Owen Lucio

This past Sunday, Owen Lucio visited with the kindergarten through 3rd graders. Owen is related to Amy Bartkiewicz.  If your child was in with Amy over the last couple of years, they have been praying for Owen and his many health needs.

Amy said that  Robin and Mason have really appreciated the prayers and cards.  Here is part of letter from Robin explaining what Owen has.  

My son, Owen James Lucio is 7 years old.  Owen has a rare genetic disorder called Joubert Syndrome. This means that he has a malformation of his brain called the cerebellar vermis, which in him has caused multiple issues with his body and his development. Children affected with JS can be have a wide variety of symptoms, and each child seems to be affected differently from the next. For Owen, the Joubert Syndrome has affected him in the following ways: 

*Complete Blindness (he can tell when it's really bright or dark, but does not see anything else) 

*Low Muscle Tone (kind of like "floppy" muscles- he still struggles to hold his head up sometimes and he is not able to walk on his own yet)

*Balance and Coordination Difficulties (does not have the best fine motor control and when he walks with assistance it is unsteady)

*Cognitive Impairment (his developmental age is somewhere between 6 months to a year and a half) 

*Kidney Disease.  Owen now has Stage 2 Kidney Disease, and his function is at about 15%.

*Multiple Belly Issues.  He has and will likely always have Chronic Acid Reflux and Chronic Constipation, likely due to his low mustle tone.  He is on several medications for these issues

*Bone Issues.  His hips are subluxed (not fully in their sockets due to not walking) and he was recently diagnosed with Scoliosis.  He wears Foot/Ankle/Leg braces to ensure he grows how he should and to help him become more stable in his walking

*Sensory Issues.  Owen is sensitive to certain sounds, touches, and textures- he is only able to eat pureed foods and still will only drink from a bottle.

*Behavior Issues.  He sometimes has melt downs out of nowhere and his mood can change from happy to crying in a mere second. He will have screaming fits and will hurt himself and others who are around him because he is not able to express what is wrong.

*Bleeding Disorder.  Owen also has a bleeding disorder called Platelet Storage Pool Deficiency- his blood does not clot like it is supposed to, so he is prone to easy bruising and special precautions must be taken during any surgeries/injuries so that he doesn’t bleed out.

 

Despite all of this, Owen is a sweet, smart, adorable boy who loves to snuggle and be around family and friends. His giant smile can light up a whole room, and he always finds a way to sneak into your heart. Those who have come to meet and spend time with Owen have grown to love him, as it’s hard not to.