CONNOR'S STORY

Connor is a 13 year old boy with VACTERL Syndrome which is a rare non-genetic disorder. Connor unfortunately has all the associated problems and a few more including related Spina- Bifida, deaf in one ear and recently was diagnosed with Inflamatory Bowel Disease ( Crohn's/ Ulcerative Colitis ). There was a one in a million chance of him having all the anomalies associated with VACTERL Syndrome.

 

In his first 8 hours of his life he had been flown to Sydney, died, suffered a cardiac arrest and was under going 2 major operations to save his life. This unfortunately was the start of many operations and hard roads ahead. Over a 3 ½ week period in ICU we learnt of many more problems he had – he was then transferred back to Coffs Harbour Base Hospital.

 

Connor's vertebrae, spinal cord, food and windpipe, stomach, bowel, bladder, kidney, liver, hearing and limbs are all affected by his condition. Many of his internal organs do not work properly and his skeleton is missing bones or they are fused together. His back is also affected by scoliosis and he has fused or missing vertebrae.

 

To date, Connor has undergone over 40 operations. Operations, medication and daily medical procedures keep him alive. He also:

·         Cannot swallow properly. He has a feeding tube for medicine and supplements.

·         Has complex bladder problems which are maintained daily.

·         Has complex bowel problems as a result of having had most of his large bowel removed.

·         Wears hand/arm splints on both hands due to limb deficiencies.

·         Wear splints in his shoes to help support his weight.

·         Has hearing loss in his right ear and wears a hearing aide

·         Has a severe life-threatening allergy to Latex/rubber.  

Connor is currently in Year 6 at his local Primary School, which has played an

important role in helping him lead a normal life. At school he has a nurse/aide all day, a medical room for his procedures, a special desk, writing equipment and his classroom is a no rubber-zone.

 

As Connor gets older it is more of a challenge to fit in with his peers and normal life, due the physical restrictions, medical restrictions and hospital admissions. He has his down days but manages to keep smiling and be an inspiration helping me to move forward. What keeps him going is his music and artistic talents where he is able to escape from the hard life he has been given.

 

Currently we are trying to raise money to help with the travel back and forth from Sydney and build him a medical equiped home which will also help with his medical needs.

 

Connor has designed t-shirts, Christmas cards, and released a CD to help him on his quest.

 

Written by

 

His mum – Cheryl

2009