Lennox Gastaut Syndrome: Taking care of the desperate

“Wherever there is a human in need, there is an opportunity for kindness and to make a difference” – Kevin Heath

World Kindness Sri Lanka, a non-profit organization aims to create awareness and build a network of support for Lennox Gastaut Syndrome, a rare epilepsy syndrome. 
The Lennox Gastaut syndrome (LGS) is a type of epilepsy with multiple different types of seizures, particularly tonic (stiffening) and atonic (drop) seizures. LGS has no cure and is known to cause developmental delays and cognitive impairment. 
An unaccounted number of children in Sri Lanka along with their families struggle to overcome the challenges of this rare syndrome on a daily basis.
In the spirit of spreading awareness and hope for this community, World Kindness Sri Lanka has organized an event from 3 p.m to 6 p.m. on March 14 at the Viharamahadevi Park.
World Kindness Creates an Empowered Society to Wrestle against LGS Kindness may just be another word in our vocabulary, but it means ‘Life’ to somebody else. 
Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behaviour, sensations, and sometimes loss of awareness in people.  

The Lennox Gastaut syndrome (LGS) is a type of epilepsy with multiple different types of seizures, particularly tonic (stiffening) and atonic (drop) seizures. LGS has no cure and is known to cause developmental delays and cognitive impairment

Some of those who are suffering from general Epilepsy might also show symptoms of LGS Brain Seizures. 

An unaccounted number of children in Sri Lanka along with their families struggle to overcome the challenges of this rare syndrome on a daily basis. Although this disease begins showing symptoms at early childhood and only accounts for 2 to 5% of childhood epilepsies, LGS has greatly affected families in remote areas of Sri Lanka. 
These seizures are difficult to contain and according to an EEG (Electroencephalogram) study, spike-wave bursts at frequencies less than 2.5 per second which means children who suffer from LGS experiences at least 50 to 100 fits a day. 
Some can even be fatal and constant caregiving is required. 
The role of a 24/7 caregiver is exhausting, due to this reason many mothers in rural villages are unable to find jobs or make a living to support the household. Additionally, with LGS being a rare disease on the island, many hospitals aren’t equipped for proper treatment.  Sought-after therapy is quite costly to afford. Besides, families of patients who travel from far, face a number of obstacles including transport, given that patients must be carried in wheelchairs. 
While seizures keep happening increasingly often, caregivers have gotten used to conducting habitual home remedies and would only seek medical help when it’s an emergency. 
World Kindness Sri Lanka feels the struggle and desperation of our LGS Warriors and their families. 
Hence, why we took up the role in being a transparent platform – or rather a bridge – between Corporate and Individual sponsors who’ll be willing to aid deserving families in Sri Lanka.  Furthermore, World Kindness Sri Lanka also hosts multiple awareness programmes around the year targeting the general public, LGS families and healthcare experts to understand more of this rare syndrome and call out for those who would be willing to sponsor a family. Currently, World Kindness Sri Lanka is looking for supporters and sponsors who’d like to be a part of this empowerment. 
World Kindness Sri Lanka could be contacted on +61406761010 or email [email protected].