The Angry Bees: A League for Special Children

The Angry Bees

Briana is what our Childcare Coordinator, Yvette, calls a tough little cookie. She has gotten through many difficult circumstances in her young life. For example, when she was younger she needed a trachea and g-tube for feeding and to recieve nutrition.  Today she gained a new found independence, and has gotten to the point where she no longer requires these tools.

Briana is a childcare and respite child who has been with UCP-OC since 2009. She is on the verge of no longer recieveing support due to a lower level of need and increased independence at the Boys and Girls Club. This is what we work towards with each child! Her aide, Christy, first suggested she play soccer in the Boys and Girls Club after school league last year. This has translated to her joining the AYSO league, and is on the Angry Bees team for children with special needs. This league gives children the chance to be active, competitive and learn team work as they work together to come home with a trophy!

The AYSO league had a V.I.P. event last weekend, in which we set up a booth with a raffle. More than 250 players, families and supporters came out for the event on Saturday, November 19th. Even better than having our booth, the event enabled us to see Briana play her sport and win a trophy! She really has come a long way, and we are so honored to support children like her.

For more information on the day you can read the article in the OC Register: http://www.ocregister.com/common/printer/view.php?db=ocregister&id=328635

Our Holiday Story: Granden

New Year’s brings memories of laughter, family and celebration. It’s not a time where one expects to hear “Your child has Jeune Syndrome,” a rare genetic disease where 60% of cases do not live past the age of two. However, on New Year’s Eve 2009 Frank and Geri Kate heard this news, and were faced with the daunting odds, that their baby boy, Granden, would not live past two.

“There is fear in uncertainty” Geri Kate, Granden’s mother, recalls thinking on that fateful evening. From that moment on their life has been a race to provide Granden with the services and therapy he needs to not only survive, but to thrive.

  Jeune Syndrome affects the growth of long bones, limbs and ribs. This can have serious side effects, and for Granden it has resulted in a restrictive lung disorder. His small rib cage restricts his lungs from expanding, causing him to tire easily and averting him from crawling. This crowding of his organs has also caused a reflux creating an aversion to food. Just 3 months-old, and Granden was diagnosed with a failure to thrive.

  Seeking Answers, Regional Center directed Frank and Geri Kate to United Cerebral Palsy, UCP-OC, for Early Intervention, education and family support. Due to many delays in his motor development and his inability to roll over, UCP-OC’s therapy team initially evaluated 8 month-old Granden with the physical ability of a 2 month-old. With Granden’s failure to thrive affecting his health, the team at UCP-OC acted immediately. 

This year  Granden has celebrated his second birthday, and graduated physical therapy at UCP-OC!  He is an active thriving typical toddler who loves to run, climb and explore.  Each milestone  enables his family to celebrate a longer, happier and more healthful future for Granden!  

It is often complex for parents to navigate the fragmented system of care for children with special needs.  UCP-OC helps to simplify the process for parents like Geri Kate and Frank by providing access to comprehensive services in one location.  Since 1954, UCP-OC has ensured that dreams are met, talents are explored and stories of children living a life without limits are told.

 

“We are giving back to UCP-OC this holiday season in gratitude for the difference they have made in our family’s life. UCP-OC is helping Granden beat the odds. We’re all working together to help our son live a Life Without Limits.”

– Frank and Geri Kate

Continued deep budget cuts have lead to a lack of funding for Early Intervention programs across California. Without your support these critical programs that help children like Granden will not continue. Every child deserves to live a Life Without Limits, and your donation will help make this happen.

By sending in your gift or going online at http://www.ucp-oc.org/UCP/Granden_Donate.php?type=default, you can make an impact on a child’s life today.  

Thank you for making a difference in the life of a child!

Make sure to view Granden’s Story via video on our website.

Life’s a Journey With CP and Me

Hello everyone at UCP-OC!

What a month this has been, college really is such a whirlwind! Thankfully, I’ve kept myself busy planning an event here at Soka University in Aliso Viejo. Tomorrow night, there is a campus-wide movie showing of Beyond Limits that I am hosting alongside the Humanism in Action Club! For those of you who aren’t already familiar with Beyond Limits, it is a short documentary about Bonner Paddock, a man with Cerebral Palsy from OC and his daring climb to Mt. Kilimanjaro in 2008. The Life Without Limits Center is actually featured in the film as part of the main focus for Bonner’s motivation to climb Mt, Kili, pretty neat, huh? I am showing the film in order to bring awareness and support to centers like UCP-OC, and simply for fun…I think it will be a great way to meet people on campus, and share a bit about my own story and what it is like to have CP. I am kind of nervous, being the only freshman and all really trying something new like this, but I know once I get up there with a few others, I will be okay. 🙂

After the showing, we are going to raffle off a few posters and DVD’s and have a Q&A session with Bonner himself! I am so glad he can attend, because I think he’ll help really share more about our cause in supporting children with disabilities. Not only that, but it’s not often the star of a cool movie attends small events like these, so I am hoping we will have a good turn out! There are only about 450 students on campus right now, so it can’t really get more personal than that.

Also, the Soka HIA club is going to go to the Friday Night Club for Teens with Disabilities on December 2nd at the Life without Limits Center, so we are going to see if more people want to join us and even work on more projects for raising awareness (and maybe some money too!) for this cause. I am super excited to hang out with some cool teens, and get Soka involved as well! I think it is great to make new friends, and meet people from all different kinds of backgrounds. 🙂

So that’s the latest scoop on everything a college girl with CP is doing. I hope you all have a great Thanksgiving and holiday season!

-Katy

Child of the Month: November

Dylan

The month November has many important days such as Thanksgiving… and Black Friday, as well as its our Child of the Month, Dylan’s, birthday! Dylan Delgadillo was born prematurely on 11/05/09, arriving about 15 weeks early and weighing only 900 grams (under 2lbs.). He needed to have a prolonged hospital stay as he gained weight and strength, and needed the assistance of a ventilator to breathe. His young parents, Brian and Melanie have struggled with Dylan’s situation – Brian works full-time and Melanie was a student who now stays home to care for Dylan. This young family has moved to Huntington Beach to co-reside with the grandmother in order to meet all their needs.

At 8 months-old, Dylan was responding as a 4 month-old, which as considered within normal limits due to his prematurity – but he was clearly at high-risk for developmental delay. Due to stricter eligibility criteria form the State of California, he did not qualify for the State’s Early Start program, however he was entered into the Prevention Plan and began Let’s Grow classes at UCP-OC with Moira, one of our highly experienced Physical therapists. At 17 months-old (13 months adjusted), Dylan was not walking and Moira suggested that he be fitted with orthotics to give him greater stability.

In April, he received his orthotics, funded through United Way’s grant, and within 1 week Dylan began to walk; within 2 weeks he was taking steps on his own; and within 3 weeks was walking through his home independently. By mid-June Dylan was practicing going up/down stairs.