‘Kaila’s Krew’ To Make Debut
At Miles for Matheny

Kaila with her parents, Kim and Tad Jones

Having a child with a disability, says Kim Jones of Phillipsburg, NJ, forces you to appreciate small moments.  “You don’t get the joy of the first step or all the words a child may say, but a click of a tongue, a smile when you walk into a room and the hugs bring us just as much happiness.”

On Sunday, April 18, a large group of people will be walking in Natirar Park in Peapack, wearing t-shirts that say, “Kaila’s Krew”.  They will be the aunts, uncles, nieces, nephews and friends of 18-year-old Kaila Jones.  The occasion will be the Lu Huggins Wheelchair Walk at the 13th annual Miles for Matheny, and Kaila’s parents, Kim and husband, Tad, are bringing all these people together to support the Matheny Medical and Educational Center because they are so thankful their daughter is a student at the Matheny School. 

Four years ago, the couple felt their daughter had outgrown her Warren County Special Services  classroom at the Great Meadows Regional Middle School.  Kaila, who was born with spina bifida and a condition called cri du chat syndrome, needed, in her parents’ opinion, more challenging therapy and a social environment that included students similar to her.  Children with spina bifida are born without a complete spinal column.  Cri du chat syndrome, also called deletion 5p, is a rare genetic disorder caused by a missing portion of chromosome 5.  It causes intellectual disability and delayed development, and  infants with cri du chat sometimes have a high-pitched cry, which sounds like a cat.

The school district agreed Kaila was ready to move on, says Kim Jones, “but they had no idea where to place her.  So they asked us for suggestions.  We went on the internet, and we found Matheny.  After we received a tour, I left crying tears of joy.  Everything at Matheny is for a child with a disability.  This was a school where all the children had challenges similar to Kaila’s.  What we love about Matheny,” she continues, “is that every single person who works here knows Kaila.  It’s just amazing the closeness and love they have for our child.”  The big difference, adds Tad Jones, is that, “everything is tailored to each child, as opposed to adapting a regular school program to the special needs kids.”

Kaila is paralyzed from her hips down, and, shortly after she was born, says Kim Jones, “we were told that, mentally, she would be a vegetable.”  That did not happen.  Kaila is mostly non-verbal, but her mother vividly remembers when her daughter learned the word, “Mom”.  “She called me ‘Bo Bo’.  Every time she said that I would correct her.  I will never forget the day when she was 10 years old, and she said ‘Mom’ for the first time.  After crying, I had her say it probably 50 times so she would never forget it, and she didn’t.” 

The Jones’ goal for Kaila has always been to help her be as independent as possible.  That, they feel, is being accomplished at Matheny.  Some examples of that, Kim says, are, “feeding herself and moving from room to room in her wheelchair without our help.  And, though she is not very verbal, we can see how happy she is being a student at Matheny.  It’s a wonderful school with wonderful loving people that have patience and knowledge.”  

In addition to the wheelchair walk, Miles for Matheny includes a 5K race, several cycling routes and a kids fun run, followed by a celebration picnic at Matheny.  Funds raised help support the Matheny Center of Medicine and Dentistry, which provides medical, dental and therapy care to inpatients and people with disabilities in the community.  Title sponsor is sanofi-aventis, one of the world’s leading pharmaceutical companies whose U.S. corporate headquarters is in Bridgewater.  For more information or to register, log onto www.milesformatheny.org or call (908) 234-0011, ext. 260.

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