Dream comes true for child with rare genetic disorder
A young boy’s dream came true just before going into theatre for a surgery today.
Little Aidan (7), became the youngest “member” of Team Red. Aidan, dressed in his red ER24 superhero flight suit, took his first official ride in an ambulance.
With the help of the sirens blaring and the lights flashing, Aidan, in the company of his ER24 and Life Healthcare “colleagues” and family, bravely reported for duty at the Mediclinic Morningside.
Aidan, who lives in Bryanston, was diagnosed with a rare genetic disorder called Costello Syndrome when he was 18 months old. The syndrome is so rare that he is only the second diagnosis in South Africa. He is one of only a few hundred people worldwide who has been diagnosed.
Costello Syndrome affects various parts of the body. In Aidan’s case, he has to undergo abdominal scans every three months to screen for cancerous tumours. He also has to undergo heart scans as he has a thickened left ventricle wall.
In addition, Aidan has Culcaneo Vulgus Feet as well as a number of other challenges as a result of the syndrome.
Aidan recently developed growths under his lower eyelids. Today’s surgery was to remove these growths as well as adenoids as a result of them affecting him.
Aidan has been for numerous operations. To lighten his mood in the run up to today’s operation, Aidan’s mum, Melissa Botha, requested a visit from any emergency service.
“Aidan loves emergency services… firefighters, police officers, paramedics, ambulances… he gets so excited. With the run up to this operation and Aidan having so many bad experiences, I thought about having a fireman, police officer or paramedic visit him to take the edge off. I put a message on Facebook stating that Aidan was not dealing well with the idea of another hospital visit. I requested a visit from any emergency service. ER24 contacted me wanting to assist. ER24 blew my request out of the water,” she said.
ER24 paramedics visited Aidan yesterday with a goodie bag and a flight suit.
He put the flight suit on immediately and did not take it off until it was time for his bath last night. “The first thing he did this morning was put the flight suit on again,” said Botha.
That was not all. Today, ER24 Joburg North and paramedics, including branch manager Saul Behrmann, picked Aidan up and took him to hospital.
“There were a number of vehicles (response vehicles, an ambulance and rescue vehicle) at our door. ER24 made such an impact. Aidan got to ride to hospital in the ambulance. He was the paramedic and I had to play the patient. I cannot thank ER24 enough. Aidan was so excited and had a blast before his operation. The paramedics literally changed his whole experience with hospitals,” said Botha.
Aidan has become a household name in many homes with various people wanting to help.
As a single mum trying to do the best for her child, Botha has had to find ways of helping Aidan cope with the challenges he faces. She has also had to find ways of raising funds to cope with monthly expenses.
“As a result of the Culcaneo Vulgus Feet, Aidan was walking almost with the insides of his ankles. We tried various non-invasive ways to treat the condition. However, last year he had to undergo an operation. It was one of the most difficult operations we went through. He was in Plaster of Paris for more than six weeks and if you know Aidan, you will know that he is busy all the time. His mobility is his expression of communication. I had to keep him busy. He was a bit depressed that he could not move around. As a single mum it is a challenge. Aidan also gets uncomfortable with food and clothes and even getting him ready for school is a challenge. The biggest thing that works fort him is imagination. I cannot be an adult all the time. I have to be a child with him… to entertain him, get him to school and be on schedule.
“Finance is another challenge. Aidan has to go for occupational therapy and needs medication and specialised equipment. There are costs that are not covered by medical aid. The average cost of raising Aidan is about R35 000 a month,” said Botha.
To raise funds, Botha created a website called Raising Aidan.
She raises funds by selling cupcakes catering for everyone’s taste including those who are diabetic or require gluten free.
You can help raise Aidan by buying these cupcakes. To find out more about how you can help Aidan, visit www.raisingaidan.co.za or visit the Raising Aidan Facebook page.