Kaiman was born on August 11, 2010. From the onset, he appeared to be a healthy, bouncing baby boy. However, at 18-months-old, he had two seizures back-to-back and was rushed to a local hospital. A CT scan noted lesions on his brain, so the family was sent to Children’s Memorial Hermann in Houston for further testing. The devastating news came just days later. Kaiman had Leigh syndrome and doctors predicted he only had months to live.
While he outlived the prognosis, Kaiman’s Mom and Dad, Tiffany and Rico, struggled to keep him healthy. On average, Kaiman endured six to seven hospitalizations a year, each lasting a week to 10 days. When he wasn’t in the hospital, Kaiman was seeing dozens of specialists in an attempt to slow his declining health.
In October 2016, Kaiman’s family received a call from Make a Wish Foundation – they were sending them to Sesame Place in Philadelphia. Kaiman was beyond excited to meet his favorite characters Elmo and Snuffleupagus.
Unfortunately, just two days into the trip, Kaiman took a turn for the worse and had to be flown back to Houston. He never fully recovered and on December 17, 2016, at just six years and five months old, Kaiman passed away.
Rico and Tiffany have allowed us to share Kaiman’s story with you for several reasons. Most notably to honor his memory and to illustrate why we need your support. Children with Leigh syndrome will continue to die until we uncover better ways to treat it or discover a cure.
Please consider making a tax-deductible donation to PALS this holiday season and join our fight against Leigh syndrome.
Your generous donation will impact the lives of patients like Kaiman through PALS’ support of Dr. Mary Kay Koenig, MD and her team at the UTHealth Mitochondrial Center of Excellence and the Leigh Syndrome International Consortium.
Specifically, over the next year, PALS’ funding priorities include:
- $15,000 for TRiaLS: The International Registry for Leigh Syndrome, which connects patients to clinicians and researchers running clinical trials
- $100,000-plus to continue to fund the Leigh Syndrome International Consortium that is actively working to improve diagnoses, develop treatments and cures, and optimize clinical care for Leigh syndrome patients
- $30,000 for physical therapy and dietician services to improve quality of life for all patients seen by the UTHealth Mitochondrial Center of Excellence
Tax-deductible donations can be made:
- Online at https://www.peopleagainstleighs.org/donate
- By calling executive director Lindsey Klingensmith at 713-248-8782
- By mailing a check to PALS at PO Box 7057, Houston, TX 77248
Thank you for your support!