Barrington Bulletin

The most complete and most convenient source for news and information about the borough of Barrington, N.J.

Barrington mom seeks help for son with extremely rare genetic disorder

As part of National Mobility Awareness Month, a customized wheelchair accessible vehicle is being given away — and a Barrington mother is asking for your help in getting the van for her son, Casey.

Here’s her words (and picture) from the voting site:

I would like to tell you a story of a mother’s love. Suzanne Umba is a divorced mother of two children. One of which has a permanent handicap. Her youngest son, Casey, has a rare genetic disorder. Chromosome 8-P syndrome, is one of only 15 known cases around the world. The very rare chromosome disorder, for which there is no cure, has left him severely physically and mentally disabled for life. He is completely dependent on Suzanne and her family for all of his needs. At this time Casey is eight-and-a-half years old, around fifty pounds. The reason this is so important – Casey’s muscles are underdeveloped and he cannot walk on his own.

Swallowing her pride Suzanne asked her mother to open her house to her and the grandchildren. However, the task of caring for Casey is becoming increasingly difficult. All-be-it slowly Casey is growing and needs to be carried everywhere. Especially for Suzanne who has the daunting task of lifting Casey most of the time. She has suffered a few back injuries along the way, a reality that terrifies her because she is the primary caregiver for Casey.

Suzanne works night and day to get the medical treatments, supplies and future needs for Casey. Her latest accomplishment was a new chair for Casey so he can be wheeled around his new addition. Which Suzanne was able to almost pay for with several fund raisers and gracious donations from many of “Casey’s Angels”. That’s what the family calls someone who is kind enough to open their heart to the situation.

Suzanne had a FORD minivan that was recalled due to a rotting frame. They kept the van, her only transportation for Casey, and offered a few dollars in return. It was not enough to purchase a new van or even help with a handicap vehicle – what she really needs. Having no income because she stays at home to care for Casey, there is little hope of her getting the handicap vehicle she desperately needs to continue caring for Casey and being able to not only take him to the doctor’s visits (which are often). But so the family can travel together to a store for groceries, or to a soccer game for Casey’s big brother Ethan.

Please be one of Casey’s Angels and help his mother take care of him for many years to come.

—–

Suzanne Umba also sent the Barrington Bulletin the following message:

Hello! My name is Suzanne UMBA and I live in Barrington with my two boys, Ethan & Casey. PLEASE VOTE for me to win a HANDICAPPED accessible MINIVAN for my SON, CASEY?! You’re allowed to vote once every 24 hrs, and can use PROMO CODE 999 the first time to give us 5 votes instead of one. It takes less than a minute to vote, and if you wouldn’t mind sharing the link with as many people as possible, I’d be so very gratefu!. Thank you so, so much for your help! We truly appreciate it.
http://www.nmeda.com/mobility-awareness-month/local-hero-contest

—–

According to the site, run by the National Mobility Equipment Dealers Association, “We are also asking people to submit their stories to be showcased by national and local media over the upcoming months. Favorite stories will be voted on by your friends, family and peers, and the winners will be awarded a new customized wheelchair accessible vehicle.”

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5 comments on “Barrington mom seeks help for son with extremely rare genetic disorder

  1. Ernie Wadsworth
    May 3, 2012

    Come on people! Vote! Vote! Vote! Help Casey.

  2. Liz Abuschionw
    May 10, 2012

    So, this is the same woman, who lied to her neighbors so we wouldn’t know that she was going to build a 2 bedrom home to their property, telling us they are building 1 bedroom, and one bath. ends up being 2 bedrooms, a bath, and a sitting area with and firreplace. All for voluntary funds and free.

    Here, we took her word for it, so we do not go to the planning board meeting, to review. Who would deny a handicapped child a room. What a surprise.

    So, the Umbas get a variance blocking our entire view when they have a large backyard, and plenty of space to build on. Rather than using their ample space to build on. Now all we see is their obstructive building.

    Shame on the planning board for allowing this to happen and shame on the Umba’s for taking advantage of their neighbors.

    And now, she wants votes for a free wheelchair — How ironic!!!!

    You are not getting my vote!!

  3. Liz Abuschionw
    May 10, 2012

    so how do you vote NO

  4. Pingback: Barrington boy’s plight gets media attention « Barrington Bulletin

  5. Pingback: Rotary Club comes through for Barrington family « Barrington Bulletin

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This entry was posted on May 3, 2012 by in Uncategorized and tagged , , , , .
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