Please Donate and or Pray for Jon, Nikki and Lily

Lily is an adorable and cheeky little girl who has a very rare genetic condition known as PIPO.

Lily has spent over a quarter of her life in hospital and has undergone many surgical procedures.

This fundraiser is for Jon and Nikki, Lily’s caring parents.

Jon and Nikki’s world was turned upside down when Lily was first admitted for emergency surgery at just six months of age for a life-threatening bowel obstruction. This led to an extremely long road to Lily’s diagnosis of Paediatric Intestinal Pseudo Obstruction (PIPO) – a rare genetic condition affecting gut movement and bladder.

Little Lily requires a feeding line into her stomach, colostomy bag, and PICC line. All needing time-heavy daily maintenance and sterilising. This is to keep Lily functioning and constantly monitor any life-threatening bowel obstructions or line infections. Lily’s medical ports must remain clean and dry- Lily is not able to enjoy a simple bath, a play in the sand, a swim in a pool or a trip to the beach.

There has been a steady stream of new issues. Right now, her stoma (bowel) is prolapsing almost daily, and she needs to wear a permanent supportive belt to help keep it in. Surgery was unsuccessful and they have been told there is “nothing else they can do about it”. The hospital has only been able to provide a poor quality, very uncomfortable belt for Lily. Unfortunately, Lily does not qualify for NDIS funding, unlike most children with similar stomas! This makes it impossible for them to afford proper medical equipment, without such funding. Lily is missing out on things that could help and support her to live life to her fullest.

Most of Nikki’s days with Lily have been spent following Lily around with her mobile IV pole to prevent Lily from pulling out the lines. Which as you can image makes it extremely hard to get anything done.

Jon and Nikki are human. They are thoroughly wearied and stressed with the daily strain and worry, and not knowing the next moment they’ll be calling another ambulance for little Lily.

Jon is a talented hardworking tradie, currently in the first half of his carpentry apprenticeship. Nikki is an amazing nurse, caring for babies in the NICU department, trying to take shifts when she can for some extra money to pay the bills. But most importantly they are kind, loving devoted parents of Lily! Jon and Nikki are so thankful to God for their gorgeous Lily and for how far she has come with the incredible blessing of the care she continuously receives from the Women’s and Children’s Hospital.

We felt compelled to provide a place for people (like us) to give money to help support in the following ways:

Any amount you can give is helpful and appreciated, no matter how little. We are also sincerely asking for prayers. Please pray for Jon, Nikki and Lily, for their physical and mental health at this time, they are in need of a miracle and are in need of strength. “With God all things are possible” Matthew 19:26.

Thank you so much for showing them you care!

This fundraiser has not in any way been requested or instigated by Jon and Nikki but has been organised by David and Steph, who met them when they moved in next door about five years ago. Seeing what little Lily is going through, their day-to-day struggles and ambulances coming and going is heartbreaking. We thought others, like us, may be looking for a way to practically help when sometimes we do not know how.