Fundraising event for Kayden who has rare genetic disorder

Fundraising event for Kayden who has rare genetic disorder

17 August 2016

KAYDEN McCulla probably thought it was his birthday when introduced to the funfair of activities at Ballynahinch’s Redburn Clinic. 

The two year-old jumped gleefully on the bouncy castle, played with his friends and splashed in the sponge bath completely unaware of the devastating disease that has left him with only 10 to 20 years of his life left. 

His mother, Rachel McCulla, watched over him: “He’s just in a bubble of his own, in his own world,” she explained, glad he didn’t know what was ahead of him.

Kayden was diagnosed with MPS III Type B, a rare degenerative genetic disorder that affects the neurological and eventually physical capabilities of the individual. 

His mother, Rachel, first noticed something was wrong when he began struggling with communication, something Kayden had excelled at before. “He had gone back to babbling like a baby,” she explained, later finding out that he suffered from MPS III after he was referred to hospital with pneumonia. 

Rachel was shocked at the news as there was no family history of the disease and is rare — only one in 70,000 births are affected worldwide. 

Rachel’s colleagues at Redburn Clinic, where she works as a care worker, decided to arrange a fundraising event to aid the McCulla family. They reached out to local businesses to provide fun activities for both children and parents on Thursday, filling the Redburn garden with tea and cake stands, sponge throwing baths, party games and massive bouncy castles, kindly provide by company ‘Bounce N More’. 

Rachel hopes the money raised by the event will allow Kayden and her to have a trip away and make the remaining years of his life as normal as possible. 

Currently he is unaware of any difference between him and the kids around him however his mother understands that eventually her first child will begin to struggle with simple things in life and wishes to make it as easy as possible for him.