Sergio Belu Sterling hts, MI 2,619 Votes
Sergio is a brave 13 year old diagnosed with Batten disease.
Batten disease is a rare autosomal recessive disorder,meaning the child inherits 2 copies of the defective gene,one from each parent.
A missing enzyme that causes a build up of lipopigmens(fats) which cause the death of neurons in the brain ,retina and central nervous system.It also affects many other body tissues such as skin,muscle,etc.
Sergio suffers severe seizures and mental impairment,he can’t walk,he’s unable to communicate,he’s almost blind and bedridden.
He is also diagnosed with Cerebral Palsy and is treated for Cystic Fibrosis.
Sergio has a feeding gastrostomy and tracheostomy in place.
He recently was diagnosed with neurogenic storms.Neurostorms produces the brain to become hypersensitive. Hypertension,accelerated metabolism,cognitive impairment,high fever and abnormal sweating occurs when the autonomic nervous system loses control.His neurostorms would last between 1 and 2 hours and at least 2 episodes of storms per night.
Sergio require 24/7 private duty nursing.
Beeing very prone to infections “The Vest” and “The Cough assist” treatment are vital for his daily life routine.The Vest is a medical equipment that makes him shake to loosen the mucus in the lungs and The Cough assist is a special equipment that acts like a vacumm that will help suck the mucus from the lungs.
Sergio is getting Physical Therapy 4 times a week to maintain his muscle tone and Ocuppational Therapy and Recreational Therapy once a week to stimulate him.Sergio attends a homebound school program clasified SXI .So,despite the difficulties of his condition he manages to throw us a smile once in a while and follows voices.Sergio likes to listen to music.He enjoys having the two nicest nurses in the world and the kindest therapists that we have ever met.At school time he will activate hand over hand a toy ,or react to toys animal sounds,not to mention the teacher’s voice which is adorable.
Sergio’s eyes get bigger at the sound of grandma’s voice or when he hears his daddy talking to him or the touch of his hands when he tickles him.And of course his brother’s stories from school are very interesting but above all his mama’s hugs and kisses are priceless.
We have to take Sergio to doctor appointments very often and we are desperately in need of a wheelchair accessible van.
Sergio is my HERO! He is still full of life.
THANK YOU very much for your consideration.