Tatem petet
As writen by Tatem's mother:
Tatem is a beautiful and determined 26 month old little girl. She was born at 29 weeks and has already overcome a world of obstacles. Although she flew through her six week stay in the NICU, it was evident at 3 months old she was different.
Tatem and her twin brother were automatically enrolled in a Developmental follow up program through the hospital. Although her brother Jude showed little signs of prematurely, Tatem demonstrated she was not meeting her developmental milestones. By her 6 month evaluation, she was diagnosed with Sensory Integration Dysfunction which is a neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular), and/or the positional sense (proprioception). Tatem struggled through this dysfunction, often days were very challendging for her to get through. By her 9 month evaluation, she was reccomended for the Early Intervention Therapy Program for a severe delay in development.
Due to this recommendation, Tatem underwent a series examinations and it was determined that she had a condition called Periventricular leukomalacia (PVL). It is characterized by the death of the white matter of the brain due to softening of the brain tissue. It can affect fetuses or newborns; premature babies are at the greatest risk of the disorder. PVL is caused by a lack of oxygen or blood flow to the periventricular area of the brain, which results in the death or loss of brain tissue. The periventricular area (the area around the spaces in the brain called ventricles) contains nerve fibers that carry messages within the brain. Although babies with PVL generally have no outward signs or symptoms of the disorder, they are at risk for motor disorders (especially of the lower limbs), delayed mental development, coordination problems, and vision and hearing impairments. Children with PVL have higher levels of nystagmus (wobbling eyes), strabismus (a turn in the eye), optic nerve hypoplasia and refractive error. PVL may be accompanied by a hemorrhage or bleeding in the periventricular-intraventricular area (the area around and inside the ventricles), and can lead to cerebral palsy. Doctors have also indicated that she will get an official diagnosis of Cerebral Palsy at 18-24 months of age.
There is no known treatment, medication, or surgery for this condition. The only reccommendation is therapy. Tatem is currently in the at-home Early Intervention Program and at Weissman Rehabilitation Center for outpatient therapy, but that is not aggressive enough for Tatem to reach her full potential as a person. There is a new program in New York that would be a perfect fit for Tatem.
The program involves an intense schedule of 60 hours of various therapies in conjunction with the Therasuit™.
The Therasuit™ is a form fitting suit consisting of a cap, vest, shorts, kneepads, and specially adapted shoes, all connected to each other through a system of adjustable straps and elastic bands. The Therasuit™ serves as an external skeletal support for patients with neuromuscular disorders (including Cerebral Palsy). The Therasuit™ facilitates independence in the development of new gross and fine motor skills like sitting, standing, and walking. When worn during and in conjunction with physical therapy, the Therasuit can accelerate a child's progress. This program has been compared to 7 months of traditional therapy.
Heather Petet