At just six months old, baby Colbie Durant was diagnosed with a rare genetic neuromuscular disorder known as centronuclear myopathy — a life-altering moment that left her parents, Bruce and Lauren, reeling in shock and fear.
Centronuclear myopathy is a rare genetic condition that causes muscle weakness from birth or early childhood. It happens because muscle cells are formed differently, making movement and strength difficult.
two years later, Colbie has been fitted with a feeding tube which remains in place to feed and hydrate her and is in desperate need of a Grillo walking aid, a device that will allow the toddler a chance of mobility.
The community has rallied together and family friend, Liam O’Hagan, has organised a barefoot bowls event to raise funds take care of Colbie’s needs and medical expenses.
“Colbie is my niece and Colbie’s father has been a good friend for many years. As a member of Round Table East London No1, I brought the story to the guys, and they were supportive in running a project to help with items and expenses that they might need. The main goal is to obtain enough finances to purchase the walker.
“Our secondary goal is to bring awareness to rare diseases and to the family so others can either assist or draw support,” O’Hagan said.
Colbie spent four months in the NICU with doctors trying everything to figure out what was wrong with her and treat her. The last two years have been rough on the Durant family, especially their little fighter. She has undergone countless tests and has endured needles, X-rays, ECGs and EEGs.
“Colbie is a sassy little warrior that keeps on defying the odds and expectations of so many medical professionals. She has the heart of a lion, the nature of a lamb, the most infectious smile and eyes that will melt your heart. She gives the best morning cuddles and is a real loudmouth for someone who cannot speak,” her mother said.
According to O’Hagan: “Rare conditions often go under the radar, which can lead to misdiagnosis or a lack of research funding. By raising awareness, we give families like Colbie’s a louder voice and shine a light on conditions that deserve more attention and support.
“Colbie has come a long way. There have been many long nights and exhausting days and weeks and yes, it is difficult to constantly remain positive about the cards that we have been dealt, but this is the hand we have received. God has been our cornerstone. If it was not for our faith and relying on His strength, we would not be where we are today,” said her father.
To participate in the fundraiser, teams can enter at R300 per team. The event will take place on Saturday April 12 at Comrades Bowling Club in Selborne.
For more information, contact Liam O’Hagan on 082-493-0819.
