Carter's life of pain gets a little easier

Carter Drake has more energy for his classes at Waipawa Primary School thanks to a new intravenous feeding system that is helping him in his ongoing battle with intestinal failure.

Since he was 18 months old, Waipawa youngster Carter Drake has had to be fed through a feed tube inserted in his stomach, but a new system is providing some relief to him and his family.

Carter, now 7, suffers from a complex, evolving and progressive intestinal failure disorder. It is a multi-system disease that causes lethargy, fatigue and pain through his muscles, abdomen, bowel and bones.

One of three children to Mark Drake and Meredith Kingston, he has battled pain all his life and had numerous hospital admissions and appointments.

A recent development is easing the burden.

About three months ago Carter started Home Parenteral Nutrition (HPN), whereby the food is delivered in liquid form in a bag of sterile solution via a catheter into a vein close to his heart.

All procedures and connections must be aseptic, to minimise infection risk from bacteria entering the bloodstream.

Carter is attached to his Parenteral Nutrition via two machines for 12 hours every night at home, with the support of a team of medical professionals.

"This system goes straight to his duodenum because his stomach and bowel don't function properly - it's gentler and has given him relief," said Ms Kingston.

It has also given Carter more energy and enabled him to continue attending Waipawa School four mornings a week.

"He loves going to school, and he's also able to enjoy more time with his twin sister Gabby and little sister Holly," Ms Kingston said.

Carter is one of 215 patients - about 12 are children - in Australia and New Zealand living with Intestinal Failure (IF) and being kept alive by Parenteral Nutrition.

From August 2 to 8 is HPN Awareness Week, aimed at making people more aware of this condition which leaves patients often feeling isolated and unsure of where to turn for emotional support.

Ms Kingston and Mr Drake were keen to tell their story to help inform people and also let them know about Parenteral Nutrition Down Under (PNDU) - a patient-run support group for those who have HPN and their carers.

"We have fantastic support and help on our journey to help Carter live as pain-free and enjoyable a life as possible while searching for answers and possible cures from our Hawke's Bay Hospital and Starship teams."

-Anyone keen to learn more about the support group can email contactpndu@gmail.com or head online to the website www.pndu.org