Rory and Caden Titre were born 12-weeks early on March 8, 2019. Mom Lisa delivered them via emergency c-section just one day into her third trimester due to twin-to-twin transfusion syndrome.
Following their birth, the boys spent 140 days in the NICU and faced a myriad of challenges. Both were plagued by lung infections and had difficulty eating and seeing. The issues they faced were attributed to prematurity, and the Titres were told they may resolve over time.
In January 2020, the boys started to experience seizures. A heavy dose of steroids was prescribed and the seizures stopped. However, Caden’s seizures resurfaced in April and Rory’s in May. During that time the boys also had setbacks in growth and development, which led their medical team to evaluate other causes. Genetic testing began and the Titres patiently awaited the results.
At the beginning of the summer, Caden was rushed to the ER for difficulty breathing. Taking his medical history into account, he was transferred to Lutheran General Hospital where they ran a number of tests, including a MRI that uncovered lesions on his brain – the telltale sign of Leigh syndrome. Rory’s testing soon followed.
When the genetic tests came back, both Caden and Rory were diagnosed with Pyruvate dehydrogenase complex deficiency (PDCD) with Leigh syndrome-like symptoms.
According to the United Mitochondrial Disease Foundation, children with PDCD can’t convert the food they eat into energy – energy that is used not only for children to run, play, and learn, but also for cell formation, growth, and throughout the lifetime of a cell. Without energy for the cells to maintain healthy functioning, they can become damaged and possibly die. Without healthy functioning cells in all parts of the body, children with PDCD can experience poor muscle tone, neurological damage (brain cell injury, cognitive delays, and seizures), and other problems like poor feeding and lethargy.
At the recommendation of their medical team, Caden and Rory started the KETO diet in July 2020 to help their bodies produce more energy. In just two months time, Lisa and Dad Luke have seen a vast improvement in their symptoms. On their caring bridge site they reported:
“Both Rory and Caden have been different kids after a month on this diet. Both smile a lot more, wiggle, coo, ‘talk’ and will respond and interact with Mom and Dad! We never really ‘knew’ our kids until now.
Rory is awake most of the day and absolutely LOVES his bouncer. He has learned with a few hip thrusts he can make the chair move and now spends a majority of his feeds using this newly found skill. But, his favorite is still when Mom and Dad bounce the chair for him.
Caden is quickly developing a fun personality that we think he is getting from big brother. His new routine is to make as much noise as he can at night and wake up super early to get some one-on-one snuggles with Dad. Mom is still able to get the most smiles out of him. According to Mom and the boys’ Physical Therapist, they both think Rory and Caden occasionally make sounds which sound like, ‘Mom’.”
While the boys are doing well, there is still much that needs to be done to uncover better treatments and ultimately a cure. Please consider making a donation to PALS to give Caden, Rory and others affected by Leigh syndrome and other neurological diseases like Parkinson’s, ALS and Alzheimer’s, hope for the future.