CYPRESS & KATY — A local special needs family needs is looking for help and you can benefit from delicious BBQ the weekend before Cypress schools start up.
The Katy National Little League (KNLL) covers roughly half of Cypress-Fairbanks ISD’s attendance zone, and offers Little League baseball to both boys and girls, but one of the volunteer-leader families is squaring off against huge expenses and could use your help.
“The Tortorice Family has been a part of Katy National for many years as coaches, players and board members,” said KNLL vice president Ryan Wade. “My plan is to procure all of the BBQ Wednesday or Thursday and start cooking Friday until everything is done.”
Wade explained that the meat will be available for pickup in front of the KNLL barn on Saturday Aug. 25 starting at 3 p.m. All orders are due in by midnight Tuesday, Aug. 21.
David and Michelle Tortorice are at the baseball fields every night their league is playing and have helped provide sports to thousands of boys and girls in the Cypress and Katy areas.
All proceeds will be distributed to the family to help cover whatever expenses they may be facing.
“Our girls turned 18 last March,” Michelle explained on the family’s GoFundMe page. “Now for most parents that is both a nerve wrecking and joyous milestone. Your child is now an adult and can make choices without you. And you hope that you’ve raised them well enough that they make the right choices. Well our experience is much different than this. Both girls are special needs and both have multiple permanent disabilities. Cerebral palsy, autism, anxiety disorder, chronic lung disease, feeding tubes, brain damage, the list goes on.
“And both are severely delayed. Hunter more so than Hannah. Hannah can talk a little and sign and write but cognitively she about maybe 8-9 years old. Hunter on the other hand cannot speak, cannot sign, cannot write and cognitively is about one-year-old. She is a baby who is now an adult. For us, turning 18 doesn’t mean freedom, it means our jobs as parents just became 100 times harder. Despite their disabilities, despite us being their parents, once a child is 18 you can no longer make decisions on their behalf, unless you file for guardianship of the person.
“So although we are their parents and their primary caregivers and have been their entire life, if you do not file for guardianship you are no longer allowed to make decisions regarding their medical needs, their education, their finances and not even their habitation. Without guardianship in place the two people that know them the best and have raised them would eventually be striped of their decision-making-capabilities.
“That is our reality. It’s not enough that everyday is a struggle to keep them healthy and alive but something so simple as turning 18 can throw a huge monkey wrench in to your everyday life.”
Before the girls turned 18, their parents started the legal process for guardianship. However, Michelle explains that they have to get lawyers for both themselves and for their daughters.
“So not only do we have to pay for our attorney we now have to pay for their attorney,” Michelle explained. “This is what special needs parents face: years and years of sleepless nights, dealing with one after another of government agencies to get your kids the support they need, never knowing if a simple cold will turn in to pneumonia and ultimately kill your child, the endless doctors appointments and therapies, a garage filled with medical supplies and never knowing if Medicaid will suddenly decide not to provide them anymore, person after person in your house day after day and never having an ounce of privacy. All of this culminates in to that moment that your child turns 18 and you suddenly have to “ask permission” to continue to care for them and fight for them. And if that wasn’t enough, you have to empty your bank account or get a loan just to even do it, when all we want to do is to continue caring for our children — our sweet girls who cannot care for or defend themselves.”
Another way to help will be donating to the family’s GoFundMe page (https://www.gofundme.com/special-needs-guardianship)
If you’re interested in having your son or daughter play Little League baseball, fall ball sign up is available until Aug. 24, 2018, online here (http://katynational.org/site)
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