Let's help Jack to keep walking and never give up!

Jack was born with a rare metabolic disorder called Hunter Syndrome which is a degenerative disease that affects every cell in the body eventually leading to death once the organs can no longer function. Life expectancy is 10-20 years and Jack is now 15 years old.

He has undergone many surgeries as his body degenerates and yet he is a superstar hero to us all as he positively embraces his hurdles with a smile and still aiming for and dreaming of things he'd still love to do in his short lifetime here. One of those dreams is to 'walk' The Freedom Trail in Boston and see more of the world!

Jack has had a race against time from the moment he was born. As the years go past, there are more bigger and major surgeries for Jack to push through, to come out the other side and still be here and achieve his goal.

Within Jacks first 5yrs, he had started of with a stay in the Neo Natal unit even though he was born full term. This was due to not being able to feed, head lag and low body tone and barely waking. From there he has had to be physically taught all of his mile stones. How to eat and swallow, crawl, sit and walk with Physio Therapists, Occupational Therapists, Speech and Language Therapists and more. He has had numerous heart scans, MRI's, nerve conduction studies, ENT surgeries, carpel tunnel surgeries, and emergency blood transfusions for loosing too much blood through blood noses.

After turning 5, the next years saw him go through major open heart surgery, where he nearly slipped away, due to bleeding out into his pericardial sack. Then followed a diagnoses of Von Willie Branz, a bleeding disorder.

After mums fight for the treatment Jack required for 2 yrs, he began receiving Enzyme Replacement Therapy infusions through a portacath, at the hospital every week when he was 6. This is not a cure, but a treatment that slows down the progression of his disease. With the benefits of the treatment, also came some complications. Jack has had 3 surgeries over time, just to insert new portacaths, after infections that shut the line down, then stopping them from working.

He has had double hip tendon release surgery, followed by heart failure during recovery, followed by 2 months at a rehab centre away from home to walk. A month after getting home from rehab, headaches became severe and it was discovered that Jack had swollen optic nerves in his eyes. Further studies involved neurosurgery for inserting a probe into Jacks skull to monitor his head pressures, and with that, he was diagnosed with Inter-cranial pressure. With deteriorating eye sight over the last few years, Jack has now had 3 neurosurgeries to monitor his head pressures, with no conclusive decisions on how to treat to date.

When Jack was 10yrs old and getting tired and talked about wanting to leave his body, money was raised for him to go to America. To Disneyland, the Grand Canyon, San Diego Zoo etc was a dream of his, and it was a trip that saw his spirit bounce back. This gave him a huge lift and so perhaps life was worth living for again?

The next few years has seen Jacks mobility deteriorate, requiring the need for his wheelchair almost permanently due to pain and he now requires a series of orthopaedic surgeries. Neck, feet and hips. Last year in July he had cervical spine surgery to release his spinal cord from compression, fusion of his neck 0- c5. After rest, recovery and healing, came another 2 months of rehab to walk again. However this was cut short because of pain and issues with his feet.

Since the beginning of 2018, due to the ongoing issues with Inter Cranial pressure, Jack has nearly lost complete sight in one eye. And over the last few months, he has in Jack fashion, happily adjusted.

A year after his spinal surgery and Jack is back in his wheelchair due to pain and twisted feet. At the end of August he is about to go through his next major orthopaedic surgery to break and reset both his feet. Then he has the road of rest, recovery and healing. And after that, he heads away from home for months of rehab to learn to walk again on his new feet and strengthen his legs.

And next year, will be his hips.

This boy is a superstar and does not give up on himself and his dreams!!!

Jack lives with his mum and younger brother. Due to the nature of Jacks illness and the continuous appointments at their local hospital, and then long stays away in Starship and the Rehab centre, mum is not able to keep a job and is on the Carers Benefit, with no other parental financial support.

Through the ongoing financial stress and burden, his mum has been giving him a non funded, natural product that helps his bodies energy levels, and aids in healing and recovery from the surgeries and medications on a cellular level. With this product Jack feels a lift and more ease, making him feel happier and stronger, and able to conquer his next hurdle. During this time ahead Jack will need up to 6 doses a day as opposed to the 1 dose that mum can just afford on a daily basis.

So we'd love to support Jack and KIrsty by raising funds to make sure they can receive ongoing support through his next couple of years surgeries and the amount of product Jack requires during these times and carry on walking towards his dreams.