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‘He grabs life by the scruff of the neck and enjoys it to the max’ – Mom of boy (8) with rare Costello syndrome

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PHOTO: Facebook/Raising Aidan
PHOTO: Facebook/Raising Aidan

This free-spirited eight-year-old boy who was diagnosed with Costello syndrome is well-known for his adorable video in a police car that went viral in October.

Melissa Botha, from Bryanston in Johannesburg, found out her son, Aidan, has Costello Syndrome – a rare disorder that affects multiple organs – when he was just 18 months old.

Aidan also has a thickened ventricle wall in his heart and tight tendons, which have an impact on his motor skills. Although the youngster is a bright, exuberant kid, his mom says, he still has learning difficulties.  

Aidan is currently taking a growth hormone because he grows slower than the usual person. It also helps with his unpredictable sugar levels.

“He’s on a sugar monitor to ensure that if his sugar level drops too low, we are aware of it and can remedy as if they go too low,” Melissa tells YOU.

“He can fall into a coma or have a seizure, thankfully he hasn’t had this.”

Although little Aidan goes for check-ups regularly, his mom reveals that he still manages to keep a positive attitude.

“Aidan grabs life by the scruff of the neck and enjoys it to the max,” she says. 

“He’s not shy, asks millions of questions all the time, very endearing and caring and makes people he encounters feel very important because he really is interested in them.”

Melissa, who will soon be launching her skin and body care line, started diarising Aidan’s daily excursions and adorable obsession with the rescue services on Facebook, in order to help pay for his excessive medical bills.

“Many special needs moms have to take unpaid leave to take care of their kids when something happens, and this enables me to work from home,” she says. 

The proud mom also started the Raising Aidan microwave cake business to help with her son’s R35 000 monthly treatment. “I decided we had better start selling it to raise the funds for all his therapy,” she says.          

“I sold our first few mixes in a pie packet stapled closed with a laser printed recipe.

“Someone then offered to do our labels and that’s how it got started. We tried different recipes and different flavours, and now, we have nine flavours and four ranges including gluten-free, diabetic and Banting.”

In October, a heartwarming video of Aidan sitting in a metro police car while playing with the siren went viral, after Melissa posted it on her Facebook page. The delighted mom says she’s ‘quite amused’ that the video has been so popular and appreciates the friendliness they’ve constantly receive from servicemen.

“Aidan loved them [rescue servicemen] from the moment he could hear and see. It’s just in his blood.

“I have so many gorgeous videos of Aidan, from speaking on the loudspeaker at the Hout Bay Fire Station to playing cricket and receiving his very own real deal fireman's outfit from Chicago.

“We experience this type of friendliness with Aidan all the time from Metro, SAPS, etc. It just made me realise how hungry our country is to be unified,” she says.

Melissa makes sure her happy-go-lucky son goes for stomach scans every three months and heart scans every nine months, but that hasn’t deterred a resilient Aidan from wanting to become a firefighter one day.  

“As of today he wants to be a firefighter but some days, he wants to be a ‘pallamellic’ [paramedic]. You will often find him saying he works for ER24 and Netcare 911.”

Additional sources: rarediseases.org

 

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