The Knights Of Columbus Will Hold A Fund Raising Benefit For The Youngest Son Of Our Parishoners, Christopher Barreyro Sr.
Chris Junior Was Born A Blue Baby And Has A Multiple Congenital Defects, Among Which Are Life Threatening: He Has A Condition Called Hypoplastic Left Heart Syndrome In Which The Left Side Of The Heart Failed To Develop, And Therefore He Has Only One Valve.
He Has Kabuki Syndrome Which Consist Of Of Hypotonia Or Congenital Weakness Of His Muscles.
He Also Has Cleft Palate. This And The Hypotonia Render Him Unable To Swallow Foods, Only Fluids. Therefore He Is Fed Through A Gastric Tube Inserted Through The Abdomen. He Is Also Prone To Infections Which Again Can Be Life Threatening. He Has Deafness And Frequent Recurring Ear Infections And Has A Number Of Surgical Procedures Such As Tube Insertions Into His Eardrums.
Since His Birth 4 Years Ago He Has Had 6 Surgeries; 4 Cardiac Catheterization And Other Procedures. Soon He Will Need A Surgery To Repair His Cleft Palate.
All His Ailments Therefore Cause Him Delays In His Physical Mental Developement , Speech Impairment Due To Deafness In Which He Communicates Mainly By Signs. He Has Doctors Appointment Atleast 3 Times A Month And Is On Weekly Theraphy.
All These Are Taking Their Toll On The Family Causing Physical Mental And Emotional Strain On Everyone. The Father Is Unble To Work Due To Many Appointments With Doctors, Therapists, Treatments And Other Procedures.
In This Day And Age, This Chld Could Have Been Aborted. But He Survives And Thrives, Thanks To The Loving Care Of His Parents, Their Christian Catholic Values With Their Respect For Life.
The Days And Years Ahead Will Be Rough, But At This Time In Their Lives They Need Our Loving Support In Whatever Means We Can Give. Thankyou For Your Concern And Generosity.
Hi! I want to introduce you to my wonderful son, Christopher ( CJ )He was born 6/22/10. He was diagnose with HLHS ( Hypoplastic Left Heart Sydrome ) meaning Left Heart didn't develop. CJ has had 3 open heart surgery's 4 cardiac cath ,3 other surgery , and lots of procedures,lots of doctor appts ( approx about 2-3 times/month) ,lots of hospital stays,weekly therapy and goes to a special preschool. Among many features HLHS has, speech,mentally physically delay's among them. ( not all cases has this. CJ is 4 1/2 years old and his basic communication consists of signing (he knows about 10 signs) and a handful of words. Which leads to tons of melt downs when we can't understand what he wants or needs. Also leaves him to not playing with kids in public because they can't understand him. Which brakes our heart because he is the sweetest,kindest little boy. CJ has shown great effort in trying to communicate his needs. CJ is Feed through Gtube, and drinks water by mouth. He would be able to sign if he wants something to drink. At the age of 3 he was diagnose of Kabuki Syndrome. And just tested last month due to some issue from his insurance for coverages. Lots more of doctors visit and procedures ahead of him. His schedule to have a procedure this year of feb 25 for ear tubes and to follow another procedure for his sub mucus clip pallet. This procedures are minor but due to his Heart condition this is big and needs clearances from his cardiologist and this are out patients but due to his heart they have to observe him overnight. My family of 5 with my wife working full time is hard. Our rent is 1450/mo, 470/mo car payment,160 car insurance, 150/mo for co payment for medicines,220/mo cell phone,340/mo for utility bills,400/mo food,120/mo for toiletries, and every time we go to CHLA our expenses goes up. Approx 150 dollars for our gas and food not including lodging. There's some foundation's help us and we're so fortunate of st Vincent de Paul of helping us 4 months of paying some of our rent. ( sept-dec). The 4 1/2 years of caring a child with special needs is tough but with my family and some friends on our side makes a Big difference.
CJ is born with CHD i.e. HLHS and suffers from Gerd, low tone muscles or hypotonia, unspecified hearing loss. At an early stage of his life he went to a 2 major open heart surgery(Norwood and glenn procedure); and was suspected with kabuki syndrome just recently. CJ is fed through G tube, frequently suffers from ear infection an ear tube was placed in order to avoid it, but needs replacement anytime soon. By the end of this year he might undergo his Final heart surgery called the Fontan procedure.
We want to be there on his side when he faces a very difficult Battle! A very challenging circumstances for us You may think! but with the powerful prayers and support from You "Everything is Possible!".
Get Updates or Follow CJ @ Facebook Page CJ's Healing Heart & CJ's Colorful Journe