Eddie is a handsome 4 year old boy with a twinkle in his eye and a bright smile is our hero.
Every moment of everyday Eddie flights against the struggles put forth on him at birth. This is because he was born with two very rare chromosome disorders 9p minus (Alfi’s Syndrome) and 8q duplication. Both these disorders combined has left Eddie mentally and physically disabled. Unable to walk or talk Eddie faces many struggles. One of his major struggles is having seizure disorder and congenital heart defects.
So Why is our my hero? Because despite those challenges, he is always a happy boy. Because of his great personality, I am able to embrace the positive things he has brought to my life while we continue to address challenges. He has accomplished so much in his short life. He has already taught many invaluable lessons, and has touched so many hearts.
Lil’ Eddie was born 11 weeks early on Jan. 20 2007 after an uneventful and normal pregnancy. He weighed 3lbs 5oz and was 15.5 inches long. After getting test done we where told he had congenital heart defects that would require open heart surgery, but before surgery could be done he would have to gain weight. The doctor also informed us that because he looked different they would do genetic testing.3 week later genetic test came back and we where told Eddie had two VERY rare chromosome disorders 9p minus and 8q duplication. These two combined would leave him severally mentally and physically disabled the doctor told us. Heartbroken and speechless we wanted to know what would be next. Eddie would be transferred up to Atlanta for a genetic consult.
In Atlanta we meet with genetic doctors and counselors also a cardiologist that would give us a consult
about his heart. The genetic team didn't have much to tell us because Eddie's condition was so rare. The
cardiologist on the other hand, after reading the genetic teams notes, said to us that we should take Lil'
Eddie home and not do heart surgery because he would have no quality of like. "I wouldn't do heart surgery on my own child if they where like this" he told us.
We stood our ground and said we are not taking Eddie home and had him transfered back to Macon. Then the long wait began. Eddie would have to reach 7lbs before heart surgeons in Atlanta would operate. 80 days later Eddie reached his goal weight and off to Atlanta we went. But to our surprise for the next 5 days cardiologist and genetic counselor tried to convince us that heart surgery was a not the option for Eddie. "Are you sure you want to do it?" they keep asking us. On day 6 Eddie went into surgery.
After a total of 95 days in and out of hospital neonatal intensive care units Lil' Eddie came home. He was 3 months old and weighed 7lbs 4 oz.
Heart surgery number 2 took place in Feb. of 2008 where doctors went in to fix multiple holes that where in Eddie's heart. Today we go to the cardiologist every 6 months to monitor his heart because he still has mitral valve stenosis. Eddie will require a mital valve replacement in 5-10 years. His complex heart condition is called Shone’s complex, and is very rare.
On October 28, 2010 a new obstacle was put in our way. While on a trip to Washington DC, Eddie had 4 seizures in one day. After being in two emergency rooms he was admitted into the Children's National Medical Center. There is was given an EEG and the next day we where sent home because all was normal.
Luckily Eddie was seizure free until Feb. 2011 when he started having them at least one a week. Because of his recurrent seizures, on the weekend of Mother's Day 2011 we spent 3 sleep deprived nights at Children's Hospital in Augusta, GA. There he was hooked up to a video EEG in hopes he would have another large seizure that they would get readings and video of.
No Seizure!! Doctors did say that Eddie suffered from generalized seizures, small seizures he was having all though out the day that may be a trigger to his large seizures. Another seizure medication was added and since that one was started he has been seizure free. We have come to a conclusion that one of Eddie’s seizure triggers is travel. On July 8th we went to the space coast to see the final space shuttle launch. While there Eddie has 2 seizures. This is one of the major reasons he needs a service dog!!Besides heart surgeries and seizures Eddie has had surgery to correct his eyes and surgery to correct a birth defect in his wee wee. :o) Eddies goes to physical and occupation therapy once a week and attends special needs Pre-K 4 times a week. At school, Eddie has been making a lot of progress and his teachers have been very impressed.
That's where 4 Paws for Ability, Inc. comes in! They have accepted Eddie into their program and will be training a multi-purpose service dog for seizure response, mobility, and behavior distuption. This dog will be trained especially for his needs. It cost 4 Paws $26,000 to train these dogs. We are committed to raise $13,000 of these funds to offset the cost of training before Eddie and his dog can be united.
By supporting 4 Paws for Ability, you will be giving Eddie a constant, trusted companion that will be able to help Eddie focus, to help him walk, and help detect his seizures before they happen. You can help us with this miracle...this missing piece to Eddie's long term goals and development.
AS OF DECEMBER 2011 WE ARE DONE FUNDRAISING. OUR SERVICE DOG WILL BE
IN OUR HOME SEP. 2012!!!
IN OUR HOME SEP. 2012!!!
