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.