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Tuesday, December 20, 2011

Dr.Kay, Shannon, Creed and I at UF


We had the best time meeting the research team.

A Look into Creed's First Three Years of Life


Named after his two maternal great-grandfathers, Gordon “Creed” Pettit was born January 6, 2009. A beautiful little boy with a head full of dark hair, he seemed to do well the first few weeks of life. As the weeks went by, Creed seemed restless, especially in the evening after sundown. At about three months, his parents noticed if he was outside, or near a light, he was mesmerized and would smile and coo at the light. Even outside, he wanted to stare at the brightest point of light. Often that would mean positioning him with his back to the sun. He would crane his neck, to try and catch a glimpse of it and loved when the branches of the tree would shift and reveal sunbeams.

The first year of his life, Creed found happiness in only one place — outside. No matter how hot, or cold, Creed wanted to be where the light was brightest.

By age two, Creed had visited a handful of doctors including an ophthalmologist who reported every area of the eye appeared to be normal and healthy. He was referred to a neurologist who did a brain scan reporting that all looked normal. It was then suggested that he might be autistic. After a visit to a doctor who is renowned in the field of autistic research and diagnosis, Creed’s behavior was observed over a period of about an hour. He wanted nothing to do with stacking blocks, or playing games — his desired interest lied in staring out the window, or again, up at the lights. The doctor incorrectly diagnosed him with autism.

In defense of the doctor, while the diagnosis was wrong, children with Leber’s Congenital Amaurosis display autistic signs. Since the vision is affected, the hearing becomes acute and often children with LCA will cover their ears due to even simple noises that bother no one else, such as the buzzing of electric lines overhead, certain brand of car tires, and the hum of fluorescent lights. An LCA child also has delayed speech and motor skills due to the low vision.

It was as if the case were closed once Creed was labeled with the autism diagnosis. He began occupational, ABA, and speech therapy to work on various skill sets. The good thing about the therapy is the people were amazing and since Creed was delayed, so each effort helped him play catch up.

As time progressed, the one thing that constantly played on our minds and those of our relatives, was that there appeared to be a serious problem with Creed’s sight. And contrary to many children with autism, Creed loved to be held, hugged and kissed. He couldn’t get enough of it. And he never engaged in the uncontrollable screaming often displayed by autistic children. 

After going to several other doctors for second and third opinions and undergoing a total of two MRI’s, five eye dilations, and an EEG, the doctors again said — "Creed’s autistic." This past August, in total frustration, we videotaped Creed struggling to find his way in dim lighting at night with arms stretched out and hands up. He walked into walls and hit his head on door jams and then would start again going in another direction, hitting chairs and tripping over anything on the floor — not crying, not frustrated but determined to find his way. We then took the video up to the pediatric ophthalmologist who had been seeing him for more than a year and we asked one question — “Will you please take 45 seconds to watch this video?” The doctor did and then looked up and said, "We have to get Creed into Bascom Palmer Children’s Hospital in Miami." At Bascom Palmer, on September 8, 2011, after 48-hours of rigorous testing, it was discovered that Creed had Leber’s Congenital Amaurosis.

The news was devastating, especially when the doctor said, "His vision is blurred but glasses will not help; the outer edges of his retinas are grainy and he probably has no peripheral vision (which we already knew) and eventually, without a cure, Creed will become totally blind. 

The next 24-hours were truly like living outside of oneself wanting to scream STOP/WAIT/HOLD-ON A MINUTE, as information was processed, blood was taken, and yes, thankfully, in the midst of a deluge of information, HOPE was presented. We were informed that extensive research has been done to find a cure for LCA. It requires the blood of the affected person and his parents be tested to find out which gene caused the LCA. This process takes four to five months of initial research on the family alone. 

In January (2012) we will find out needed information to proceed in getting Creed in a research study to hopefully cure him of the LCA, after a process that requires the damaged gene be removed from the eye and a healthy gene via what is called a "vector", which holds a healthy gene, is inserted into the retina. We anxiously await the news.
Creed is now in therapies specific to children with visual impairments. His advancements have been in gigantic leaps and bounds. One of the reasons Creed was not able to do normal play such as stack blocks wasn’t due to a lack of motor skills but rather the fact, he could not see to stack. He now has the luxury of a light table his dad built and is able to stack and knock over and stack again. His speech has improved 75%. He also LOVES his iPad and can run circles around most adults when it comes to operating it.

At times it seems as if we have been at this for 10 years in thinking of all our son has been through in just under three years. But one thing stands out above all others — Creed is just one amazing little boy and we are so blessed to have this tough, resilient, loving little guy in our lives. He has taught us much about how to remain determined, flexible, love life for what each day brings, and accept the many gifts and talents we have versus have not.

Creed's Cause

“It is only with the heart that one can see rightly;
what is essential is invisible to the eye.” — The Little Prince

Creed's Cause — What is LCA?

Definition of LCA

Leber’s Congenital Amaurosis (LCA) is a
rare, hereditary disorder that leads to retinal
dysfunction and visual impairment at an
early age – often from birth. Of all the retinal
degenerations, LCA has the earliest age of onset
and can be the most severe.

Prevalence:
The birth prevalence of LCA is two to three per 100,000 births. The condition is the most common
cause of inherited blindness in childhood and constitutes more than 5% of all retinal dystrophies. LCA
accounts for the cause of blindness in more than 20% of children attending schools for the blind.

Creed's Cause - Summary

CREED’S CAUSE
Born January 6, 2009, Gordon “Creed” Pettit
has been a true gift to anyone who has spent
any amount of time with him.
Creed observes the YELL-WHOA TWUCK (YELLOW TRUCK) leaving his iPad page.

While the diagnosis of Leber’s Congenital Amaurosis was
very difficult to hear, Creed has continued to
be an easy going, happy little boy who loves
to explore, has a passion for music, colors,
numbers, letters, under-ducks on the swing and
can operate a computer better than many adults.