Meet the 2007 Grin Kids! GRIN KIDS 2002 PROFILE

 

GRIN KID

CITY

LIVES WITH

 

 

 

Brittany Carver (9)

Claremont

Brain damage, blindness and deafness

 

 

 

Aaron Church (12)

Granite Falls

CP

 

 

 

Timothy Clardy (5)

Charlotte

Periventricular leukomalacia, epilepsy, dysphagia,  development delay, sensory disintegration, hypotonia

 

 

 

Kendall Davis (9)

Cornelius

Severe Mental Retardation, cerebral Hypoplasia,

 

 

 

Dale Dyke (5)

Bellefonte, PA

OsteogenesisImperfecta, brittle bones, type III

 

 

 

Madison Dula (5)

Boomer, NC

MPSIII< Type A Sanfilippo

 

 

 

Taylor Gaiten (6)

Charlotte

Slow motor developmental delay

 

 

 

 

Destiny Glenn (8)

Charlotte

Congential CMV

 

 

 

 

Kerri Grimes (6)

Kearneysville, WVA

CP

 

 

 

Cassie Helton (10)

Morganton

Autism, ADHD, OCD, Slight MR

 

 

 

Deandre Humphrey (6)

Jacksonville, NC

Development Delays, 2 VA shunts, hydrocephalus, CP, seizures

 

 

 

Asia Jones (10)

Kingston

CP, Mircrocephalus, seizure disorder, G-tupe

 

 

 

Rasheed and Rashawn Junious

Charlotte

Fragile X Syndrome, Autistic

 

 

 

Cody Mason (8)

Alabaster, AL

Epilepsy, development delay A-tonic seizures

 

 

 

Kyle Mourglea (8)

Hickory

CP

 

 

 

Patrick Mims (10)

Shelby

Seizure disorders, tuberlorscrosis, brain tumors, gastrointestinal disorders

 

 

 

 

`

Matthew Mullinax (10)

Blacksburg, SC

CP, shunt, ADHD, learning disabilities

 

 

 

Jason and Benjamin Rohr (11)

Lenoir

Jason-Deafness and visual impaired

Benjamin-Asperger’s Syndrome

 

 

 

Anthony Rogers

Lenior

CP

 

 

 

Kayla Sanders (10)

Lenoir

PVL, BPD, CP, Cortical Blindess

 

 

 

Katie Scherer (8)

Charlotte

Down syndrome, Graves Disease

 

 

 

Grayson Strickland (5)

Dudley

Dandy Walker Syndrome

 

 

 

Shelby Vandegrift(9)

Pell City, AL

CP


INFORMATION ON VARIOUS AILMENTS

What is CP?
Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain's ability to adequately control movement and posture. "Cerebral" refers to the brain and "palsy" to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not "curable" in the accepted sense, training and therapy can help improve function.

What is Hydrocephalus, Bi-Polar, Strabismus, ADHD?
Hydrocephalus comes from the Greek: "hydro" means water, "cephalus" means head. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities called ventricles inside the brain. CSF is produced in the ventricles, circulates through the ventricular system and is absorbed into the bloodstream. CSF is in constant circulation and has many important functions. It surrounds the brain and spinal cord and acts as a protective cushion against injury. CSF contains nutrients and proteins necessary for the nourishment and normal function of the brain. It also carries waste products away from surrounding tissues. Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase. Hydrocephalus that is congenital (present at birth) is thought to be caused by a complex interaction of environmental and perhaps genetic factors. Aqueductal stenosis and spina bifida are two examples. Acquired hydrocephalus may result from intraventricular hemorrhage, meningitis, head trauma, tumors and cysts. Hydrocephalus is believed to occur in about 2 out of 1,000 births. The incidences of adult-onset hydrocephalus and acquired hydrocephalus are not known.

What is Periventricular Leukomalacia?
Periventricular leukomalacia (PVL) 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 from the brain to the body's muscles. Although babies with PVL generally have no outward signs or symptoms of the disorder, they are at risk for motor disorders, delayed mental development, coordination problems, and vision and hearing impairments. 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. The disorder is diagnosed by ultrasound of the head.

What is Osteogenesis imperfecta (OI)?
It is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A classification system of different types of OI is commonly used to help describe how severely a person with OI is affected. For example, a person may have just a few or as many as several hundred fractures in a lifetime.

What is Cerebelar Hypoplasia (CH)?
It has been described in the context of various clinical entities: chromosomal anomalies, in utero exposure to toxins and infectious agents, metabolic disorders and a wide variety of rare genetic neurological diseases. Cerebellar maldevelopment can involve the vermis and/or the cerebellar hemispheres from partial to total agenesis. It can be confined to the cerebellum (Norman type of granular cell hypoplasia, Dandy Walker malformation), or affect other CNS structures: the midbrain (molar tooth syndromes MTS), pons and medulla (ponto-cerebellar hypoplasia PCH), cerebral cortex (lissencephaly cerebellar hypoplasia syndromes LCH). The distinction between cerebellar hypoplasia and cerebellar atrophy is not always clear, as phenomena of secondary atrophy may occur in a hypoplastic cerebellum. A relevant number of rare cerebellar syndromes with CH and associated renal, ocular, hepatic or cardiac malformations have been described to date: Gillespie, Ritscher-Schinzel, Oro-facio-digital type II, Hoyeraal-Hreidarsson. Inheritance can be autosomal recessive, autosomal dominant or X-linked. Gene mutations have been identified in LCH (reelin), PCH (PMM2), X-linked cerebellar hypoplasia (OPHN1, DCK1) and several loci have been mapped for autosomal recessive ataxias. Mutations of a pancreatic transcription factor (PTF1A) have been identified in a family with pancreatic and cerebellar agenesis. Heterozygous loss of ZIC1 and ZIC 4 genes has been involved in Dandy Walker Malformation. The clinical spectrum associated with cerebellar hypoplasia is variable, depending on the etiology. The most common findings are developmental and speech delay, hypotonia, ataxia and abnormal ocular movements. The clinical diagnosis must be confirmed by cerebellum and brain imaging with a long term follow-up, careful metabolic and developmental work-up. Mental status is an important element of prognosis. In most cases no specific treatment is available.

What is Sanfilippo Syndrome and MPS III?
Sanfilippo syndrome, or Mucopolysaccharidosis III (MPS-III) is a rare genetic disease. This lysosomal storage disorders is due to deficiency in one of the enzymes needed to breakdown the glycosaminoglycan heparan sulfate (which is found in the extra-cellular matrix and on cell surface glycoproteins). Although undegraded heparan sulfate is the primary stored substrate, glycolipids such as gangliosides are also stored despite no genetic defect in the enzymes associated with their breakdown. The life-span of an affected child does not usually extend beyond late teens to early twenties.

What is Congential CMV?
Cytomegalovirus is a common virus that infects people of all ages and in all parts of the world. In the United States, between 50 percent and 85 percent of adults will be infected with CMV by the age of 40. However, in many other countries most people acquire CMV as children or adolescents. Most infections with CMV are "silent," meaning the person infected has no signs or symptoms.  However, CMV infection is considered a significant public health problem because it can cause disease in unborn babies and in people with a weakened immune system. Other viruses that are related to CMV include: varicella-zoster virus which causes chickenpox and shingles, Epstein-Barr virus which causes infectious mononucleosis, herpes simplex virus which causes cold sores and genital ulcers, and human herpes virus 6, which is associated with fever and rash in infants and young children.

What is Microcephaly?
Microcephaly describes a head size (measured as the distance around the top of the head) significantly below normal for a person's age and sex, based on standardized charts.Microcephaly most often occurs because of failure of the brain to grow at a normal rate. Skull growth is determined by brain expansion, which takes place during the normal growth of the brain during pregnancy and infancy.Conditions that affect brain growth can cause microcephaly, including infections, genetic disorders, and severe malnutrition .

What is Autism and ADHD?
Autism is a brain development disorder characterized by impairments in social interaction and communication, and restricted and repetitive behavior, all exhibited before a child is three years old.[1] These characteristics distinguish autism from milder autism spectrum disorders (ASD).

Attention Deficit Hyperactivity Disorder (ADHD) is a condition that becomes apparent in some children in the preschool and early school years. It is hard for these children to control their behavior and/or pay attention. It is estimated that between 3 and 5 percent of children have ADHD, or approximately 2 million children in the United States. This means that in a classroom of 25 to 30 children, it is likely that at least one will have ADHD.

ADHD was first described by Dr. Heinrich Hoffman in 1845. A physician who wrote books on medicine and psychiatry, Dr. Hoffman was also a poet who became interested in writing for children when he couldn't find suitable materials to read to his 3-year-old son. The result was a book of poems, complete with illustrations, about children and their characteristics. "The Story of Fidgety Philip" was an accurate description of a little boy who had attention deficit hyperactivity disorder. Yet it was not until 1902 that Sir George F. Still published a series of lectures to the Royal College of Physicians in England in which he described a group of impulsive children with significant behavioral problems, caused by a genetic dysfunction and not by poor child rearing-children who today would be easily recognized as having ADHD.1 Since then, several thousand scientific papers on the disorder have been published, providing information on its nature, course, causes, impairments, and treatments.

What is Fragile X Syndrome?
Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene. Fragile X syndrome (FXS), the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. (Sometimes referred to as mental retardation.) FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. Fragile X-associated tremor/ataxia syndrome (FXTAS), a condition which affects balance, tremor and memory in some older male gene carriers. Fragile X-associated premature ovarian failure (POF), a problem with ovarian function which can lead to infertility and early menopause in some female gene carriers.

Fragile X can be passed on in a family by individuals who have no apparent signs of this genetic condition. In some families a number of family members appear to be affected, whereas in other families a newly diagnosed individual may be the first family member to exhibit symptoms.

What is A Epllepsy Tonic?
seizures are brief seizures (usually less than 60 seconds) consisting of the sudden onset of increased tone in the extensor muscles.7-9 If standing, the patient typically falls to the ground. These seizures are invariably longer than myoclonic seizures. Occasionally tonic seizures terminate with a clonic phase. The degree to which consciousness is impaired is often difficult to assess. In seizures lasting longer than a few seconds, impairment of consciousness is usually apparent. Postictal impairment with confusion, tiredness, and headache is common. The degree of postictal impairment is usually related to the duration of the seizure. Electromyographic activity is dramatically increased in tonic seizures. Tonic seizures are frequently seen in patients with the Lennox-Gastaut syndrome, a disorder consisting of mixed seizure types, mental retardation, and the EEG findings of a slow spike-and-wave pattern.10-12 Seizures are usually more frequent at night.

What is Asperger's Syndrome?
Asperger Syndrome or (Asperger's Disorder) is a neurobiological disorder named for a Viennese physician, Hans Asperger, who in 1944 published a paper which described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills. In spite of the publication of his paper in the 1940's, it wasn't until 1994 that Asperger Syndrome was added to the DSM IV and only in the past few years has AS been recognized by professionals and parents. Individuals with AS can exhibit a variety of characteristics and the disorder can range from mild to severe. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. It's important to remember that the person with AS perceives the world very differently. Therefore, many behaviors that seem odd or unusual are due to those neurological differences and not the result of intentional rudeness or bad behavior, and most certainly not the result of "improper parenting". By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naiveté, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying. While language development seems, on the surface, normal, individuals with AS often have deficits in pragmatics and prosody. Vocabularies may be extraordinarily rich and some children sound like "little professors." However, persons with AS can be extremely literal and have difficulty using language in a social context.

What Is BPD?
Bronchopulmonary dysplasia involves abnormal development of lung tissue. It is characterized by inflammation and scarring in the lungs. It develops most often in premature babies, who are born with underdeveloped lungs. "Broncho" refers to the airways (the bronchial tubes) through which the oxygen we breathe travels into the lungs. "Pulmonary" refers to the lungs' tiny air sacs (alveoli), where oxygen and carbon dioxide are exchanged. "Dysplasia" means abnormal changes in the structure or organization of a group of cells. The cell changes in BPD take place in the smaller airways and lung alveoli, making breathing difficult and causing problems with lung function.

What is Graves' disease?
Graves' Disease is a type of autoimmune disease that causes over-activity of the thyroid gland, causing hyperthyroidism. This over-activity is also sometimes called "toxic diffuse goiter." The thyroid gland helps set the rate of metabolism, which is the rate at which the body uses energy. When the thyroid is too active, it makes more thyroid hormones than the body needs. High levels of thyroid hormones can cause side effects such as weight loss, rapid heart rate and nervousness. This is an uncommon disease that affects 2 percent of all women at some time in their lives. Graves' Disease also tends to affect women between the ages of 20 and 40, although it occurs in infants, children, and the elderly.

What is Dandy Walker?
It is known by many names: Dandy Walker Syndrome, Dandy Walker Malformation, Dandy Walker Cyst, Dandy Walker Variant. By definition, Dandy Walker is a congenital brain malformation typically characterized by incomplete formation of the cerebellar vermis, dilation of the fourth ventricle, and enlargement of the posterior fossa. In layman's terms, Dandy Walker is a cyst in the cerebellum (typically symmetrical) that is involved with the fourth ventricle. This may interfere with the body's ability to drain cerebrospinal fluid from the brain, resulting in hydrocephalus. Dandy Walker cysts are formed during early embryonic development, while the brain forms. The cyst in the cerebellum typically has several blood vessels running through it connecting to the brain, thereby prohibiting surgical removal. In most cases the cause of Dandy Walker is not known, though there are a few known cases resulting from autosomal recessive genes.

What is Hydrocephalus with VP shunt, microscephalic, ADHD?
Hydrocephalus, which means "water brain" occurs when too much CSF (a protective cushion of fluid in the brain) accumulates within the ventricles of the brain and increases intracranial pressure. Unfortunately, increased pressure within the colosed, rigid box of the skull cannot be released on its own by the body. Sometimes a shunt is necessary to relieve pressure on the brain from the excess fluid. Without treatment the brain will be damaged as pressure inside the skull enlarges the ventricles, causing compression and, ultimately, death of sensitive brain tissues.

What is Down Syndrome?
Down syndrome (DS) is a condition in which extra genetic material causes delays in the way a child develops, and often leads to mental retardation. It affects 1 in every 800 babies born.The symptoms of Down syndrome can vary widely from child to child. While some kids with DS need a lot of medical attention, others lead very healthy and independent lives.Though Down syndrome can't be prevented, it can be detected before a child is born. The health problems that can go along with DS can be treated, and there are many resources within communities to help kids and their families who are living with the condition.

Copyright © 2008 Grin Kids
Web Design by
Shannon Scarborough