| Sources |
- [S27] The Daily Times, http://www.thedailytimes.com/, (Blount County, Tennessee), 31 Mar 2013.
Maryville family seeks help to win handicap-accessible van for teenager
By Melanie Tucker | (melt@thedailytimes.com)
A Maryville family whose 15-year-old son Jezreel suffers from numerous chronic conditions, is asking this community to take a brief minute to make a huge difference in their lives.
The Rubios — Jeffrey, wife Nancy and Jezreel — are waging a campaign on the Internet to win a handicap-accessible van with lift so Nancy will be able to transport her son to his various appointments. Jezreel has suffered from birth with mitochondrial disease, a disease that has affected every organ in his body. He is wheel-chair bound, is unable to verbally communicate and requires around-the-clock care.
Votes are needed
May is National Mobility Awareness Month, Nancy said. There is a website, http://www.mobilityawarenessmonth.com that will be giving away that much-needed van (valued at $40,000) to a family that receives the most votes on the site. You can vote once per day through May 10. The winner will be announced a few days later. The site is hosted by the National Mobility Equipment Dealers Association, a nonprofit.
For Jezreel, problems began immediately after birth. His parents said the infant started having seizures from Day 1. Doctors in their home state of Washington were baffled.
“His blood has been sent all over the world,” Nancy said. It wasn’t until Jezreel was about 8 that the proper diagnosis was made. He is on three different medications for the seizures. Chronic kidney stones, pancreatitis, bladder problems and a gastric obstruction are the primary concerns at this point.
Nancy said there is a possibility that in Jezreel’s case, heredity could have played a factor in him getting this disease, but doctors don’t know for sure. Research says one in 4,000 people are affected by mitochondrial disease. In some cases, the disease seems to be a random occurrence. It affects people of all ages.
Taking a toll
Mitochondria exist in nearly every cell of the human body and act like tiny batteries to generate 90 percent of the energy the body needs to see, hear, walk and breathe. When the mitochondrial fail, the body is unable to convert food and oxygen into energy. That failure then begins to affect organ systems throughout the body. The heart, brain, muscles and lungs are often the most affected. Nancy said luckily Jezreel’s heart remains in good condition.
“Basically it can affect any part of your body,” Nancy said. “It can be mild and unnoticed. Then with other people it’s one thing after another. Right now with Jezreel we are dealing with issues concerning his bowels and kidneys, and also seizures. His symptoms evolve.”
Jezreel has never been able to attend public school. He is in pain a lot of time because of kidney stones, his poor functioning pancreas and muscle pain due to scoliosis. He also averages 10 seizures per day, his mom said.
Jeffrey remembers bringing Jezreel home from the hospital and watching helpless as his newborn son struggled. He said doctors told them the seizures were so violent Jezreel looked like a victim of shaken baby syndrome.
“He couldn’t cry so Jeffrey sat and just held him and cried for him,” Nancy said.
Doctors put Jezreel on a diet to help with the seizures when he was only two months old. He also has a vagus nerve stimulator implanted inside. And because he is unable to sleep, this teenager whose been on such a tough road also has to take medication to help him rest. Nancy said before that, he was sleeping 10 minutes every four hours.
The teenager is able to communicate by blinking his eyes for yes and no and opening and closing his fists for yes. He will stare at items he wants handed to him and loves all types of music. His formula is fed through a tube. Nancy said they have been told he has a life expectancy of 17 years. He will be here, she said, until he has fulfilled God’s purpose for him. “That is where Jeffrey and I have our peace. We know God is in control.”
Rally around Jezreel
This Internet challenge is big for this family. Jeffrey is the sole wage earner and they can’t afford to buy even a used van to help transport Jezreel. Nancy and Jeffrey have waged a huge publicity campaign to get it done this way.
“I can’t maneuver him on my own,” his mother said. “I can’t even lift him up into a van. He weighs 84 pounds and is 5’1” tall. I am 5-feet and a half.”
Jeffrey said he has gotten stronger over the years because of the lifting. The couple has been married for almost 17 years. Jezreel is their only child, but Nancy has an adult daughter from a previous marriage.
In addition to going on the above-mentioned website to cast votes, you can also go to the Habitat for Humanity and East Tennessee Technology Access Center sites to find links there. Habitat for Humanity built a handicap ramp at the couple’s home. ETTAC is an organization this family has been affiliated with since 2001.
The Rubios are hopeful they can gain some ground on the others who are also in this internet contest. They are asking for Blount County to step up and spread the word through email, Facebook and Twitter.
“There are so many children like Jezreel with medical needs,” Nancy said. “I don’t think people realize how many families are in these situations. There is such a need.”
Nancy and Jeffrey are part of a nonprofit organization called A Father’s Touch, which was founded by local resident Ace Sandlin. Nancy said the goal of is to be able to help some of these other families.
Where it all will lead
Television stations, radio stations, churches, friends and family are all stepping in to do their part, the Rubios said. They want to see that vote count rise.
“I am the ultimate optimist,” Nancy said. “If half of the subscribers to The Daily Times vote every day, that will be a huge number and we will be on our way. We want to show off this town. It’s going to take people. We can’t do this on our own.”
Things were made even tougher financially when Jeffrey was laid off from his job in February.
Jezreel has homebound therapy and a homebound teacher, but there are so many other programs available that require transportation. The Rubios said they just want to be able to provide the necessary care for their son.
“We need to get busy and vote,” Nancy said.
|
Search | Advanced Search
Abt 1998 - (~ 26 years)