DUBAI A British father of a one-year-old child suffering from infantile spasm is planning to run the Dubai Marathon early next year to raise awareness of this rare disability. Infantile spasm, also known as West Syndrome, is a severe form of epilepsy.
On November 5, 2014, Richie Lannon and his wife Amy (both 32) were dealt a severe blow when their two-month-old baby, Grace, had an absence seizure.
“My wife was breast-feeding our baby when she felt something was not right. For a few seconds Grace stopped responding and had a blank stare. We rushed her to a hospital but the doctor there said there was nothing wrong with Grace. We left the hospital and stopped at a restaurant for lunch. Here, Grace had another seizure which looked more severe. We admitted her to the hospital for two weeks where a series of tests, including multiple MRI’s, blood tests, spinal taps, and lumber puncture were done, but we learnt nothing,” said Richie.
More tests
“In January we took her to the UK where more tests were done. Yet there was no conclusive result. When we returned to Dubai, we noticed her seizures were getting frequent and severe. We started recording her episodes and sent them to our doctors in the UK who confirmed in March that Grace has infantile spasms,” said Richie.
“It took nearly five months for doctors to conclude what Grace had. During that time we felt helpless as we did not know what to expect next. We did not know about West Syndrome and so we could not understand the symptoms. We don’t want other parents to go through something similar,” said Amy.
Richie said his daughter is motivating him to undertake the marathon. “Grace is a brave child. Every day she has her own little marathon and faces the challenges before her. Now I want to do a marathon for Grace and all other children suffering from a similar condition.”
