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This fundraiser ended on 11/05/12

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The family and friends of Joseph Dupin is trying to raise money for medical equipment to help him adapt to a life of cerebral palsy.

Joey's story

Joey, Jojo, is a 3 1/2 year old who has Spastic Quadroplegic Cerebral Palsy (CP).  Some medical terms that refer to Joey's case specifically are:
PVL- periventricular encephalomalatia. White brain matter that is (too) soft and slows down the (axons & neurons) signals from brain to hands and feet telling them to move;  coordinate. This is what is causing his CP. 

Vermis- gives you balance 
Cerebelum- coordinates movements

Basically, parts of Joey's brain have died and he has a very hard time balancing and coordinating his movements. The improper usage of extrenuating muscles wear down cartilege and bone. 

 Things that are effortless for us are arduous for him. 

He loves to read & is a very fast learner. Has a wonderful sense of humor along with a constant intoxicating smile. 

Being born 32 weeks premature, Joey had many obsticles to overcome before even taking his first breathe. Having under developed lungs, and being born in cold and flu season,  he cought the deadly RSV virus at a feeble three months old. It was shortly after his six month when i brought it to his doctors attention that Joe was not meeting simple sitting/ crawling milestone to his doctor. We were sent to a specialist who said give it time. With continued concern we waited three more months before being refered to a second set of specialists.  This time in New Orleans and Lafayette. At eight months old Joey underwent surgery to put estatian tubes in his ears. His passage way in both ears were closed and we was basically deaf. He could only hear five percent in his right ear.  At ten months he still can not crawl and sitting is a challege. Joey started recieving therapy twice a week to help him catch up.

He was seen by a optamologist and given glasses for a condition called ambyopia ( lazy eye). We were to "patch" his eyes to keep his brain using both eyes. If you have this condition, and it persists untreated, it could lead to your brain only using one eye. At one, Joe is just now able to coordinate a slow crawl. It is not until he was one and a half he was refered to a orthopedic to see why he is falling farther behind. He was then Diagnosed with Cp and refered to a neurologist who performed an mri to confirm Pvl. An overflow of information and more specialist ensued. Fitted with special foot orthotics, we were sent home to begin a daily regiment of occupational and physical therapies. Little did we realize what lied ahead for our special little boy. 

Traveling back and fourth is a weary task. In hopes to lessen travel, we swich Joey's shoe manufacturer to a local one who fitted him with a newer style brace called an Afo. This allows his ankle to flex where it was fixed (like a ski boot) before. These new shoes would help his posture and build his confidence slowly. He is also fitted for a posterior walker to build more confidence not to fall, allow for speed and independence. 

Joe is now two years old and his eyes are still not improving with given therapies. Now on his third eye specialist, he was diagnosed with strabismus and scheduled for a double eye surgery with a sucess rate of 60/40.  Vision therapy is now added to the repertoire of therapies to re-train his brain to use both eyes as a team. 

Although aproaching his second summer in life, Joe is just now beginning how to use all the therapies and surgeries to his advantage. Two years of intense therapy has paid off and he can now take three steps with out falling.  Joey's third birthday is quickly approaching. Because of his motor skill delay, he qualifies for special education pre-k at the local elementary school.  

At three years old Joe is a full time student at S. Beauregard Elementary school. He was offered additional physical therapy during school hours and a structured invironment to help him socially interact and adapt to special children like him. The year there proved very helpful to him and he looked foward to riding the bus in the afternoon with his big sister. 

Again, Joey's progress seems to be slowing as before. We go back to his orthopedic praying for a new plan in hopes of furthering Joe's progress, but to no avail, 
He says Joe has no medical reason to be seen any longer and releases him from care. I cried & prayed all the way home from New Orleans. There had to be more in God's plan for him. 

Joey had paved the roads we were driving with courage, perseverance, and love throughout the diagnosis, surgeries, and loss of parents. I vowed not to give up!  There was more help and we were going to find it!

Months have passed and a conversation arises while passing a family friend leaving walmart. We end up talking about Shriner's hospital and how they only treat children with cerebral palsy. How did I not hear about this until now! I went to the local Shrine and filled out an application and in the same week, Joey had a appointment in two more weeks. What? No six month wait! I was in shock.  

Upon arrival we were welcomed with a plethera of smiles and toys. Joe is now leary of bleach smelling ten by ten exam rooms. He layed on his side, playing with a truck, as always, while many questions, x-rays, and measurements were taken. Multiple specialist came and monitored his behavior and left with their evaluation. 

Next, Doctor Gates, Chief of staff at Shriner's hospital Shreveport, comes in and sits down next to Joey.  I could not have been prepared less for what he was about to say. He explained how the years of improper orthopedic care had led Joey into a crippling situation. For one, Displesia. He advised that we start him on a muscle relaxer, baclofen, to alleviate immediate tension throughout his body. "His hips are facing dislocation. When they do dislocate we are prepared to surgically pin his hips into place." Secondly, Joey's leg tendons had not been completely stretched out and had never truly even stood up straight. Dr. Gates wanted to cast his feet in a 90° angle for weeks at a time in conjunction with an immobilzer pillow at night to allign his hips and stretch his tendons all at once. Again, I went in prayer asking for guidance. Is this is the right treatment? It sounded like torture to me! Dr. Gates gave me time right then to ask him the questions and decide treatment. While deliberating, Joey had looked up at Dr. Gates with a smile of affirmation and snuggled him with certainty.

With a definite plan we opened the exam door in hopes for the best quality of life we knew possible. In months following Independence, mobility and confidence have emerged from this once timid young soul. He is now able to take baby steps, cautiously, in a two foot span without falling, and still using a walker for distance to keep falling at a minimum. Joe has proved the heart of a lion. 

Jojo has always been outgoing at home. He loves to be outside and active. I cried the day he road a bike for the first time. -It took year of therapy to be able to ride a bike!

As a growing young man, he needs to stay active and just be a boy! This is extremely hard to do having limited mobility. For years our family has had to tell him "Im sorry sweetie" because it was too dangerous... and more recently because he is getting too heavy to lift and lug around.  Truth is, We do not have the proper equipment for him to play and to play safely.  There are no programs currently available to us to help buy some of this extremely expensive equipment that will help with proper positioning and give him freedom to be independant. 

Joey is constantly saying "let me do it," but truth is thats not possible without some of this equipment. I know it is Joey's dream to be more adaptable in his own home. Adaption is something people with CP face everyday. With proper equipment, all of joey's dreams can come true! 
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