Donations made by our customers go directly to funding life-saving work at Starship.
This funding provided has allowed for a part time Metabolic Dietitian for two years, to help reduce the current wait times and enable specialists to see a greater number of patients in a shorter period of time, at least 50% of whom come from outside of Auckland.
Inherited metabolic diseases (IMD) are inherited or genetic conditions that often cause an inability for the individual to produce or process specific enzymes or proteins integral to regular bodily function.
Metabolic Dietitians work with the patients in a variety of ways, including education around lifestyle and medications and how to manage a strict diet, to ensure they live a healthy life. These conditions are life long and not curable and for many, a special diet is the primary and sometimes only treatment so it’s critical to get this right.
James’ story:
“Our son, James, was born via emergency C-section due to severe pregnancy complications putting both mum and baby at risk. Fortunately, James was strong for his gestational age and was admitted to NICU to allow his lungs to mature and for him to gain weight.
When James was 5 days old, we discovered that he has LCHADD (long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency), a rare metabolic disorder that affects how he processes fats. Understandably, having had pregnancy complications and a premature baby was already stressful, and the addition of a rare metabolic disorder really just topped it off.
We feel incredibly lucky that James was instantly put under the care of the Starship Metabolic team. They swooped in the day we received his diagnosis and instantly put us at ease. They were, and still are, our own personal superheroes.
A key part of his team are the dietitians. We have regular contact with James’ dietitians (sometimes multiple times a day) to ensure he is getting the nutrients he needs and is growing as expected.
More than this, they often act as parenting sound boards when we are worried, we are not providing him with the right opportunities with his food. We are currently transitioning to solids which, with James’ specific needs, would have been almost impossible to manage on our own.
The dietitians have provided us with significant education and support to ensure we can feed James confidently. They have even gone out of their way to test recipes in their own home that meet James’ specific dietary restrictions and needs. For this we are incredibly grateful.
The dietitians and the rest of the metabolic team invest deeply into the kids and whānau under their care. For us, we know James is looked after medically so that we can just be his parents and love him every single day.”
Molly and Sam, James’ parents