Nikita Jade Disability Fund

Raising money for a special girl

Find out about Nikita's disabilities, and how they affect her everyday.

Nikita doesn't just suffer with one disability. Every part of Nikita's brain is damaged. 

Please take a minute to read below the problems Nikita faces everyday.

Cerebral Palsy (CP)

CP is an umbrella term encompassing a group of non-progressive, non-contagious conditions that cause physical disability in human development. Cerebral refers to the affected area of the brain and palsy refers to disorder of movement. It is a non-progressive disorder, meaning the brain damage does not worsen, but secondary orthopaedic difficulties are common. There is no known cure for CP. Medical intervention is limited to the treatment and prevention of complications arising from CP's effects.

There are many types of CP. Nikita has Atypical Spastic Quadriplegia Cerebral Palsy.

Spastic Quadriplegia (whole body affected; all four limbs affected equally) A common problem for children with quadriplegia is fluid build up. Diuretics and steroids are medications administered to decrease any build up of fluid in the spine that is cause by leakage from dead cells. Hardened faeces in a quadriplegic patient are important to monitor because it can cause high blood pressure. The proper functioning of the digestive system needs to be monitored as well.

Nikita is both Ataxic and Athetoid.

Ataxic type symptoms can be cause by damage to the cerebellum. Forms of ataxia are less common types of Cerebral Palsy, occuring in almost 10% of all cases. Some of these individuals have hypotonia and tremors. Motor skills like writing, typing or using scissors might be difficult, as well as problems with balance, especially while walking. It is common for individuals to have difficulty with visual and/or auditory processing of objects.
Athetoid/Dykinetic is mixed muscle tone -- sometimes hypertonia and sometimes hypotonia (hypotonia will usually occur before 1 year old; the muscle tone will be increased with age and progress to hypertonia). People with athetoid CP have trouble holding themselves in an upright, steady position for sitting or walking, and show involuntary movements. For some people with athetoid CP, it takes a lot of work and concentration to get their hand to a certain spot (like scratching their nose or reaching for a cup) because of their mixed tone and trouble keeping a position, they may not be able to hold onto objects. About 1/4 of all people with CP have athetoid CP. The damage occurs to the extrapyramidal motor system and/or pyramidal tract and to the basal ganglia.

Symptoms 
All types of CP are characterised by abnormal muscle tone, posture (i.e slouching over while sitting), reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticity, spasms, other involuntary movements (e.g facial gestures).
Babies born with severe CP often have an irregular posture; their bodies may be either very floppy or very stiff. Birth defects, such as spinal curvature, a small jawbone, or a small head sometimes occur along with CP. Nikita has spinal curvature, a small head and a small jaw. Eventually her body will outgrow her head. Symptoms may appear, change, or become more severe as a child gets older. Some babies born with CP do not show obvious signs right away. With a great proportion of babies not being diagnosed until after 6 months old.
Secondary conditions can include seizures, epilepsy, speech or communication disorders, eating problems, sensory impairments, mental retardation, learning disabilities, and/or behavoural disorders. Nikita suffers with all of these secondary conditions.

Microcephaly

Microcephaly is a medical condition in which the brain does not develop properly resulting in a smaller than normal head. Microcephaly may be present at birth or it may develop in the first few years of life. Often people with the disorder have an intellectual disability, poor motor function, poor speech, abnormal facial features, seizures, and dwarfism.

The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities. A homozygous mutation in one of the microcephalin genes causes primary microcephaly. It serves as an important neurological indication or warning sign, but no uniformity exists in its definition. It is usually defined as a head circumference (HC) more than two standard deviations below the mean for age and sex. Some academics advocate defining it as head circumference more than three standard deviations below the mean for the age and sex.

There is no specific treatment that returns the head size to normal. In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. Occasionally some will grow normally and develop normal intelligence.


 
 

Global Developmental Delay

Global developmental delay is a term used to describe life-long disabilities attributable to mental and/or physical or combination of mental and physical impairments, manifested prior to age twenty two. The term is used most commonly to refer to disabilities affecting daily functioning in three or more of the following areas:

  • Capacity for independent living
  • Economic self-sufficiency
  • Learning
  • Mobility
  • Receptive and expressive language
  • Self-care
  • Self direction
Frequently, people with mental retardation, cerebral palsy, autism spectrum disorder, various genetic and chromosomal disorders, and Fetal Alcohol Spectrum Disorder are described as having  developmental disabilities. Developmental disabilities are usually classified as severe, profound. moderate or mild, as assessed by the individual's need for supports, which may be life changing.

Cortical Visual Impairment (CVI)

Cortical visual impairement (CVI) is a form of visual impairment that is caused by a brain problem rather than an eye problem. (Sometimes termed 'ocular visual impairment' when discussed in contrast to cortical visual impairment) Some people have both CVI and a form of ocular visual impairment.

CVI is also sometimes known as cortical blindness, although most people with CVI are not totally blind. The term neurobioligical visual impairment (NVI) covers both CVI and total cortical blindness. Delayed visual maturation, another form of NVI, is similar to CVI, except the child's visual difficulties resolve in a few months. Though the vision of a person with CVI may change, it rarely if ever becomes totally normal. 

The major causes of CVI are as follows: asphyxia, hypoxia (a lack of sufficient oxygen in the body's blood cells), or ischemia (not enough blood supply to the brain) all of which may occur during the birth process; developmental brain defects; head injury; hydrocephalus (when the cerebrospinal fluid does not circulate properly around the brain, and collects in the head, putting pressure on the brain); a stroke involving the occipital lobe and infections of the central nervous system, such as menigitis and encephalitis.

Symptoms of CVI include several (but not necessarily all) of the following:

  • The person with CVI exhibits variable vision. Visual ability can change from one day to the next but it can also fluctuate from minute to minute, especially when the person is tired. 

  • One eye may perform significantly worse than the other, and depth perception can be very limited (although not necessarily zero).

  • The field of view may be severely limited. The best vision might be in the centre (like tunnel vision) but more often it is at some other point, and it is difficult to tell what the person is really looking at.

  • Even though the field of view may be very narrow indeed, it is often possible for the person to detect and track movement. Movement is handled by the 'V5' part of the visual cortex, which may have escaped the damage. 

  • Some objects may be easier to see than others. For example, the person may have difficulty recognising faces or facial expressions but have fewer problems with written material.

  • Colour and contract are important. The brain's colour processing is distributed in such a way that it is more difficult to damage, so people with CVI usually retain full perception of colour. This can be used to advantage by colour-coding objects that might be hard to identify otherwise.

  • People with CVI strongly prefer a simplified view. When dealing with text, for example, the person might prefer to see only a small amount of it at once. People with CVI frequently hold text close to their eyes, both to make the text appear larger and to minimise the amount they must look at. This also ensures that important things such as letters are not completely hidden behind any scotomas (small defects in parts of the functioning visual field)

  • In viewing an array of objects, people with CVI can more easily see them if they only have to look at one or two at a time. People with CVI also see familiar objects more easily than new ones. Placing objects against a plain background also makes them easier for the person with CVI to see.