Update: Our Crescent Cove family is saddened to share that Louie the warrior lost his battle in December 2018.
Louie is a soon-to-be 7-year-old warrior who has been fighting a monumental battle since day one of his life. Born with Trichothiodystrophy (TTD), he has been in and out of the hospital countless times and for periods ranging from a few days to seven months.
TTD is a very rare genetic disease with little overall research and a small known population of affected persons. It is an autosomal recessive disease, which means that both parents must be genetic carriers and the child must receive the affected gene from both parents in order to have TTD. The occurrence of the disease is one in a million. It affects the DNA repair process and may present in a variety of ways including: compromised immune system, respiratory issues, short stature, gastrointestinal problems, skin problems (ichthyosis, dry skin, UV sensitivity, etc.), cataracts or other vision problems, developmental delays, nephrotic syndrome, hematologic issues, and a host of other ailments. With such a small known population affected, there is limited available research and a wide spectrum of severity.
Louie has nearly all of the primary TTD conditions. However, even amongst the rare, he is one of the few that has a tracheostomy with full ventilator support. Since receiving his trach in 2017, Louie requires 24/7 nursing support at home. While a significant change to get used to, it enables him to stay out of the hospital and enjoy life as much as possible. This summer, Louie has loved to get back to playing baseball, going for walks, car rides, and even started carriage riding with his favorite horse Tanner. He continues to smile and inspire those that are lucky enough to meet him.
We believe strongly in Crescent Cove’s mission and want to help the kids, like Louie, who never lose their spirit in spite of their enormous challenges.
- Provided by Louie's mom, Theresa