Koen is an adorable four-year-old boy who was born with a congenital genetic disorder (CTNNB1). He also experiences global developmental delays, meaning he is unable to stand independently still at age four, microcephaly, hypotonia and spasticity, trouble with feeding and swallowing (and is fed through a GTube), and sensory over-responsivity disorder.
Koen receives government-funded Occupational Therapy, Physical Therapy and Speech-Language Pathologist visits once a month. Even with these services, this is too little to take advantage of his neuroplasticity and make a difference.
MPFIC funded Koen’s first intensive program at NAPA Center in Los Angeles. His program took place over 3 weeks, 5 days a week. Each day he had a 4 hour session, consisting of 2 Neurosuit hours, 1 CME (Cuevas Medek Exercise) hour, and 1 Feeding Therapy hour.
“I am writing to express my deep appreciation to the Maryam Parman Foundation for funding my son Koen’s first intensive therapy session at NAPA Los Angeles.
It has been a life changing experience for Koen. With his multiple diagnoses, Koen had a lot of challenges with sensory and motor planning. At the age of 4.5 yr old he was still functioning more like a typical 1 year old developmentally. He relied on a walker and did not stand without support. He had great difficulty with transitions, for example, from standing to down on the floor, from floor to standing, and from standing to turn then sit down, etc. These are some of the things he practiced repeatedly in the neurosuit with NAPA therapists over the 3 weeks intensive. Koen showed significant improvements over 3 weeks! In addition to the neurosuit, he used equipment like the Galileo vibrating machine, astronaut board, the listening program, and many different swings and ladders. These are all the things that we couldn’t access locally and they were very useful for strengthening Koen’s muscle tone, helping his body alignment and regulating his sensory systems. The therapists are simply amazing! They were all very in tune with Koen’s needs and very skilled at what they do. We feel like this is exactly where we needed to be. We as parents have learned a lot of techniques and strategies to bring home too!
We have returned home for over a week now and we are still seeing improvements that make our heads turn! It’s like we went to NAPA with a 1-yr old and came back with a toddler! Koen is now moving to different spots around the house to explore and getting into things he did not before. Amazingly, his speech and language has also improved; engaging us with phrases/responses that are within context. We think that the intensive sessions has “woken up” his brain’s neuroplatiscity!
Thank you to your donors for sponsoring the sessions and making this possible for Koen and our family! We feel blessed with this opportunity. The benefits are priceless!” – Karin, Koen’s Mother.
Koen has seen amazing progress, but he still has a potential to do more. Please make a donation today to help children like Koen!