Dream comes true for boy with rare disease

Freeman, 6, and his mother Melissa Botha with firemen during a demonstration at the fire station.

Bikers from the Harley Owners Group (HOG), Cape Town Chapter showed their softer side on Sunday July 24 when they treated a six-year-old boy with a rare genetic disorder to a scenic drive around the Peninsula and a visit to the Hout Bay fire station.

Aidan Freeman, who dreams of becoming a fireman one day, was diagnosed with Costello Syndrome when he was 18-months old.

He is one of only two people in South Africa with the syndrome and one of only 300 people worldwide.

André Maxwell, HOG deputy director, said the chapter had not hesitated for a second to make Aiden’s dreams come true when they received an email from a Good Samaritan asking for their help.

On Saturday, the group ar-ranged a meet and greet for Aiden and his mom, Melissa Botha, at the Harley Davidson branch in Green Point. Mr Maxwell said Aiden had been super excited when he spotted a police bike on the floor.

“He immediately climbed on the bike and squealed with laughter as we switched the blue lights and sirens on. Every time we switched the sirens on he would tell us to close our ears,” Mr Maxwell laughed.

On Sunday, the group departed from the dealership in Green Point and made their way, via Camps Bay, to the Hout Bay fire station.

Aiden is from Johannesburg and was visiting Cape Town for two weeks to undergo an operation at the Red Cross War Memorial Children’s Hospital.

Ms Botha said Aiden had been very excited about the trip and had got up in the early hours of Sunday morning, ready to go.

“He knew about the ride on the Harley Davidson, but he did not know that we would be going to the fire station. That was a surprise,” she said.

At the fire station, Aiden was introduced to the firemen and treated to a ride in the fire truck as well as a demonstration. “He was bursting with excitement, and it was definitely the highlight of our trip,” Ms Botha said.

She said Aiden was very passionate about becoming a fireman, and on her birthday this year, he said: “Mommy it’s your birthday, let’s go to the fire station.”

“That was so special,” she said.

Mr Maxwell said giving back to the community and people in need were close to the chapter’s heart and it showed a softer side of bikers.

“People often see us as rough when in fact we are just the opposite. It was an honour to make Aiden’s dreams come true and to share the beauty of Cape Town with him and his mom as well as give the heroes at the Hout Bay fire station some credit,” he said.

According to the National Organisation for Rare Disorders (NORD), Costello syndrome affects multiple organ systems of the body.

The condition is characterised by growth delays after birth, short stature, extra loose skin on the neck, palms, fingers, and soles of the feet, abnormally flexible joints of the fingers, abnormalities of the heart and thickening of the heart muscle and unusually thick lips among other things.

Ms Botha said Aiden had had abdominal scans every three months to screen for cancerous tumours, and heart scans as he had a thickened left ventricle wall.

“He also has Culcaneo Vulgus feet – a postural deformity in infants – which we need to correct after the age of 10 years,” she said.