Rare condition leaves children severely disabled

Ivan Cameron suffered from a very rare epilepsy syndrome that was coupled with severe cerebral palsy.

Children with Ohtahara Syndrome will have severe cerebral palsy, difficult to control epilepsy and delays to their development.

In Ohtahara Syndrome, seizures start before the child is three months old and usually occur in the first 10 days after birth.

Most babies have an underlying structural brain abnormality which may have been passed on in their genes, or there is brain damage before or around the time of birth.

Experts have linked the condition to metabolic problems and all babies born with this syndrome are neurologically very abnormal.

Often they are very floppy and excessively sleepy and over time they may develop stiffness in their limbs.

The syndrome can be very difficult to treat with medication and children are mostly severely disabled, remaining totally dependent on others and often feeding poorly.

Death usually occurs within the first two years of life due to chest infections.

Early symptoms of the condition will include seizures and problems with feeding, such as gagging on food or vomiting.

A youngster may also be slow to crawl or walk and have weakness in their limbs, slowness of speech and a delay in developing social skills with other children or family members.

The major effect of the cerebral palsy is that it causes movement problems such as difficulties walking, feeding, talking or using the body.

People can be unable to sit up without support and require help with feeding.

Depending on which part of the brain is damaged, there may be problems with sight, hearing, perception and accompanying learning difficulties.

People with cerebral palsy also often have difficulty controlling their facial expressions.

Ohtahara Syndrome results in epilepsy which is defined by recurrent seizures (sometimes called fits).

A seizure is caused by a sudden burst of excess electrical activity in the brain, which causes disruption to the way messages pass along the body's systems.