Boy too ill to visit firefighters… so they come to visit him

Special to the Lake Okeechobee News
OCFR made 8-year-old Connor Jackson’s day when they showed up at his home to give him a tour of the fire truck.

OKEECHOBEE — Some of Okeechobee’s Finest made life a little brighter for Connor Jackson, a local 8-year-old who has been living a nightmare for the last three years. Okeechobee County Fire Rescue station one showed up at Connor’s home yesterday, July 17, because they heard the young boy was too sick to come to them for a tour.

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Connor Jackson was diagnosed at age 5 with Chiari Malformation and then with Hydrocephalus. His mom said he wants to serve in the military, be a law enforcement officer and become a neurosurgeon when he grows up.

Connor was diagnosed with severe Chiari malformation when he was 5 years old, and this caused brainstem dysfunction. He had a Chiari decompression and in the same hospital stay was diagnosed with hydrocephalus. He required a shunt, and has since had a total of 22 brain surgeries. The shunt that was placed last month has continued to fail, and since June he has had five surgeries. His shunt has failed yet again, but they are trying to wait for his neurosurgeon Dr. James Baumgartner from Advent Health for Children to come back from a conference in two weeks. After a week and a half in the hospital, he was sent home on oral dilaudid to help the pain until Dr. Baumgartner can return. He is looking into doing a cranial vault expansion, because they can no longer get the shunts to work. This surgery would take pressure off the ventricles of his brain and allow them to expand and hopefully make the shunts last a little longer.

Special to the Lake Okeechobee News
Connor was invited to the station for a tour but for the last month and a half has practically lived in the hospital, so the station came to him.
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In the last six weeks, Connor has only had a four-day stretch out of the hospital and that ended with a life-flight back to Orlando because he had a blood clot on the top of his shunt.

The fire department had offered to give Connor a tour but because he has been too sick, spending most of the last six weeks in the hospital, it has not worked out. The longest period Connor has spent at home in the last six weeks has been four days, and that ended with him being life flighted to Orlando because he had a blood clot in the top of his shunt. Because of this, the fire department decided to come to him. Connor is only a little boy and has dreams of serving in the military, becoming a neurosurgeon and being a police officer, his mom, Wendy Barron, said.

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“I barely spoke three words to these wonderful superheroes because I don’t like to cry in front of Connor. They truly are amazing,” said Connor’s mom.
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Connor had an amazing time with his new friends from OCFR.

Ms. Barron works as a correctional officer for Okeechobee Correctional Institute and said, “They have been amazing and supportive through the whole thing. I could not ask for better people to work with. They are my family. Because of the Family Medical Leave Act, I am allowed to stay with Connor at the hospital, however, I am out of paid leave. So it has put a financial burden on my family.” Ms. Barron’s friend Sara Jackson set up a Facebook page to help spread awareness and hopefully raise some financial support for the family. The page can be found by searching for “Help for Connor and His Family” on Facebook.

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“Ever feel really sad and then you get a hug from out of nowhere and it makes you feel warm and safe? My community has enveloped me in their love,” said Connor’s mom, Wendy Barron.

Connor and his mom were so excited when the firefighters came over. After the visit, Ms. Barron posted on Facebook, “Most of you know what a long journey Connor has had and still has ahead of him. Today he had a bright spot in the chaos that has become our lives. I am so blessed to be a part of such an amazing community. The Fire Department came out today and brought the trucks for Connor. It was such a blessing. We never know when Connor will have a break between surgeries so they decided to bring the fire department to him. I held back the tears as they showed Connor all of the equipment, etc. They were so kind and made such an impression on Connor. Thank you is not big enough for the gratitude I feel.” She said she was so overwhelmed she barely spoke to them because she was afraid she would cry, and she does not like to cry in front of Connor.

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Connor researched Tom Hanks and found out he loves typewriters, so he wore his typewriter shirt and brought up the subject to him.

Ride for the Fight has been very generous to the family as well she said. They helped cover quite a few bills and offered the purchase of honey through CW Beekeeping on Connor’s behalf. For every $10 (1 lb.) jar of honey they sell, Connor gets $5.

Special to the Lake Okeechobee News
Before Connor had his last surgery, he was able to meet Tom Hanks and Tim Allen when they were promoting good will and Toy Story.

On July 18 Connor’s mom received a call from the sheriff’s office she said had her in tears. They want to make Connor an officer for a day, when his health allows. She said she wished she could describe how she feels. She just knows she feels surrounded by love, like maybe it doesn’t all rest on her shoulders.

“The troops have rallied, so watch out hydrocephalus. We are here to kick your butt!” she said.

Cathy Womble is a staff writer for the Lake Okeechobee News.

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