Luis Enrique is an adorable little boy who was born with Apert Syndrome. This rare genetic condition has left him with multiple physical challenges including low tone, limited hand dexterity, and difficulties with speech. He also faces the need for a major surgery to correct his craniosynostosis, a bone disorder of his skull.
Working closely with surgical teams in Managua, SPTLN has arranged for the testing he will need to move forward with surgery. We have also supported his family through the process, assisting with transportation and incidental costs.
During our trips to Nicaragua this year, Luis Enrique has met with our therapy support teams who have provided valuable instruction on exercises that his family can do with him to improve his dexterity, and we have even been able to provide special wrist support braces to assist him with activities of daily living. That sort of support will allow him to not only perform more independent activities, but will also encourage his overall cognitive development.
Wilson was born with a deficiency in his thyroid hormone production. Unfortunately, this leads to significant developmental delays, learning disabilities, and profound constipation. Our medical team has been able to help get him back before an Endocrinologist to get his thyroid function tested and to ensure he has the supplementation he will need to keep his metabolism balanced. In addition, we are carefully monitoring his gastrointestinal status as we work hard to get his constipation under control.
Meanwhile, our FNE team has been working hard to address his nonmedical needs including- access to school, accommodations there and at home, support for his family, and maybe most importantly… having some fun!