13-Year-old Wilson’s Disease patient receives aid

A hospitality organisation, Groupe Sebastien, has donated more than GH¢20,000 to a 13-year-old boy who has been diagnosed with a rare disease, Wilson’s Disease, at the Korle Bu Teaching Hospital (KBTH) to support his treatment. 

The organisation paid for the cost of treating the disease believed to be the first recorded in the country for two years and also presented GH¢10,000 for his upkeep and transportation for treatment.

The boy, whose mother is a trader, requires GH¢450 per month, for treatment for the rest of his life to live a normal life. The inherited disorder causes too much copper to accumulate in the organs, especially the liver, brain and eyes, possibly to a life-threatening level. 

Presentation

At a brief ceremony at the Korle Bu Teaching Hospital yesterday to present a cheque to her mother, the Chief Executive Officer (CEO) of Group Sebastien, Femi Asante, disclosed that her outfit decided to help the 13-year-old boy after reading about his plight in the Daily Graphic and was moved by the valiant efforts of health professionals to detect the illness.

“So, we thought that as a company how we could also contribute towards his well-being was to pay for his medication for the next two years,” she said. Mrs Asante expressed the belief that the payment would enable the boy to return to school and lead a normal life.

“We also, in support of this, are donating a further GH¢10,000 to his mother to be able to bring him to the hospital and care for him,” she added. Mrs Asante added that it was important for businesses to help society in diverse ways and called on other organisations to support, saying collectively, corporations could make a real difference across the country.

Gratitude

The Head of the Neuro-Developmental Clinic at the Department of Child Health of KBTH, Professor Ebenezer Vincent Badoe, expressed gratitude for the support and said the boy had begun to show signs of improvement and that the money would go a long way to ensure he lived a normal life.

“What we say is that children are the heritage of the Lord, so for those who delight in helping these children, we also think that they get the Lord's blessings. As a department, we are very grateful because, for a treatable disease, we think that the outcome will be very good,” he added.

Prof. Badoe, who diagnosed the boy with the disease, used the opportunity to explain the rare illness, the cause and symptoms, stressing that it was treatable. “It is good news that we know the cause. We were able to prove that this was the cause, that it is a defect in copper excretion.

So all we do is to give a drug that pushes out the copper and that's exactly what we started to do and we have started seeing great improvement already,” the paediatric neurologist said.

The boy’s mother (name withheld) also expressed her profound gratitude to the organisation, with the hope that her son would continue to respond positively to the medication.

She recalled when she first saw a difference in her son’s health and behaviour, saying “he improved when he started taking the drugs and we hope the Lord God will heal him.”

Treatment

The treatment often includes medication that can prompt the organs to release copper into the bloodstream. Symptoms typically begin between the ages of about five and 35 and they include swelling, fatigue, abdominal pain and uncontrolled or poorly coordinated movements.

The condition, believed to be the first in the country, is said to affect one out of 30,000 population in developed countries. The boy was diagnosed with the fatal genetic disease after his mother, a trader, detected his deteriorating handwriting.