Ray Martin hosting dinner for Connor

01 Oct 2013

Connor Maclean was born with a rare condition called V.A.C.T.E.R.L. Syndrome which has effected nearly every organ in his body. He also has Crohn’s disease, limb deformities, related Spina-bifida, Rhuematoid arthritis, hyper mobility in all joints and complicated gastro-intestinal problems.  On top of this, Connor has a life threatening allergy to rubber and is deaf in one ear. Connor’s life revolves around multiple medical procedures every 2 – 3 hours to ensure that his body continues to function. Life is not fun but in spite of this, Connor has a heart and a spirit larger than life, enduring constant pain and discomfort without complaint, but more often with concern for others and a smile. His life revolves around medication, operations and hospitals not having fun with his peers.

Connor has been a tireless fundraiser for important causes such as Westmead Children’s Hospital, and amongst other things recorded a CD where he raised over $32,000 for the hospital to help other kids and families in their time of need. Connor himself spends a lot of time at the Children’s Hospital and it has been his second home since birth.

At 16 years of age Connor has spent more time in hospital and endured over 60 operations – more than many of us will ever experience in a lifetime. Connor is very unwell at present and has only recently returned to Coffs following a 6 month stint in hospital due to major gastrointestinal complications. His Australian Doctors are unsure how best to support Connor’s ongoing needs due to the rarity of his condition. Connor needs to travel to the USA to access potential specialist treatments that are not available in Australia.

Connor’s biggest support is his Mum Cheryl. As a single Mum, Cheryl’s focus has always been on Connor and getting the best for him. It has been a roller coaster ride of emotions and issues for Cheryl since Connor’s birth. Cheryl is not one to dwell on misfortune, she just gets on with doing what she needs to do every day. Cheryl recently broke her foot and then lost her clothing shop Harmony Boutique in the Rivers Store fire. Cheryl originally opened Harmony Boutique to help pay for Connor’s medical and daily expenses. Not one to stay down, Cheryl has opened a Pop-up shop in the CBD and we encourage people to visit. Cheryl and Connor are the sort of people that ask others how they can help rather than ask for help themselves.

Cheryl comments “It is difficult as we have always tried to be independent and make our own way but I have to admit now we would appreciate some help. The trip to the US for Connors treatment will be very expensive but necessary if Connor is to regain better health and some quality of life. ”

So Coffs community we need your help.

As part of the Community Care Options Real People Real Choices Real Solutions Conference 16-18 October Ray Martin, award winning journalist and friend to Cheryl and Connor, will host a Gala fundraising dinner. It is on Thursday 17 October at Opal Cove Resort and all proceeds from tickets sales will go to Connor.

Ray is currently overseas on assignment but sent this message on Friday. “Connor is an absolute champion & a great friend. He laughs & sings through the toughest times & he’s had plenty of them. Please be generous because he ALWAYS is – with a lot of love.”

Tickets to the Gala dinner being held at Opal Cove Thursday 17 October are available by phoning Community Care Options on (02) 6650 2000.

Connor and Cheryl are also seeking some new accommodation, as their current home is no longer meeting their needs. If you have or know of someone who has a 3-4 bedroom single story home for rent please call and let us know.