Gardenware has always been a family business. I started it as a part-time venture in 2003 when I was working for my parents and then went full-time in 2004. That same year we had a beautiful baby boy. He was born at home. As his head was coming out the midwife called to me to do the honours. This was not part of the plan, but too in shock to say no I moved into position and a minute later had a healthy baby boy in my hands.
Jarrah grew into a delight to have as part of our family. He thrived at school with respect from both his teachers and peers. He was a caring older brother to his two younger sisters that just adore him. He enjoyed long distance running and was addicted to Snapchat and Instagram. Last year he started working in the family business and if you ordered in the last eighteen months it’s likely Jarrah packed your order.
This perfectly healthy boy started to show signs of slurred speech at the beginning of August. We took him to the doctor and the only thing that could be seen as the cause was excess saliva. We continued to take him to doctors as he continued to deteriorate, but could not get a clear diagnosis. Eventually we took him to emergency and got him a MRI. He was admitted and a week later diagnosed with Wilsons disease.
It is a rare condition where he can’t eliminate copper like most people. The copper stores in his liver until the liver rejects it and then goes to the brain and causes havoc in the basal ganglia. He has not responded well to treatment and is now immobilized. He is fed through a nasal gastric tube and can only communicate by moving his eyes towards yes and no cards. He is in chronic pain with cramps and muscle spasms from dystonia. He now has a intrathecal balcofen pump inserted to help with pain and muscle tone.
The doctors say there will be some improvement, but it will be very slow and take many months. His mother, Nat, who most of you have emailed or spoken to on the phone, and myself, take it in turns staying with him overnight in The Queensland Children’s Hospital (Formerly Lady Cilento Hospital) in Brisbane. We want to keep Gardenware running, but we can’t pack orders every day while we are needed in the hospital, which is a two hours drive from Gardenware. For the rest of the year we have decided to pack orders only on Tuesday and Friday.
Please be patient with us. We will get your order shipped and we will return your phone calls, just not as fast as we used to. If you can email instead of phoning you will get a quicker response. We will endeavour to check emails daily. We appreciate the support of our long time and loyal customers.
We have been at the Queensland Childrens Hospital for over 7 months now. The nurses have been amazing and so caring of Jarrah.
No discharge date yet. Home modifications are needed for Jarrah to come back home. The process has been started through the NDIS to make this happen. We are grateful that the hospital has helped us navigate the NDIS.
Jarrah loves family and friends visiting and even though he is non verbal, we have learnt there are other ways of communication. Micro expressions and who would have thought you can communicate so much just through eye gaze.
We look forward to the day we can have an update that says Jarrah is back home 🙂