Jack's journey to walking

To know Jack is to love him.

This is the hardest thing for us to do; to ask for help and to ask people to donate. We have never wanted to do one of these but after alot of encouragement from friends and especially my NAPA mum friends here it is ...

For those that don't know, Jack is heading into a HUGE year next year - starting school and then not long after him and I are heading to Sydney for 6-8 weeks for SDR surgery. We will be living at Ronald McDonald House and our family will be split. I will have limited ways to work as Jack needs lots of therapy and rehab especially in the 2 years post surgery and we can't put him through the pain and fear to not do everything to get the best outcome. There is no guarantee but we are going to be Team Jack and help him "walk and do everything my friends can do".

Jack was born October 2017 at 31 weeks and has shown his fight and determination ever since. Jack is an amazing 6 year old little dude who has spent more of his life in therapies than playtimes. He does it with a cheeky grin and the best one liners.

Jack was diagnosed with Spastic diaplegia cerebral palsy level 3 at 14 months old. Jack finds walking challenging and is quickly fatigued and is in pain. He cannot straighten his knees or bring his heels to the ground making balance and walking very difficult.

In 2024 Jack is facing the scariest but hopefully an amazing surgery which will hopefully help with his spasticity and reduce pain - SDR. Selective Dorsal Rhizotomy is a spinal surgery to cut the nerve that is causing the spasticity in his legs. To take out that tightness from his legs would be amazing. But the surgery is scary and will involve alot of rehab to gain strength back and learn how to walk with his new legs.

This is something mainly myself has been hesitant to put Jack through, I'm scared, but over the last couple of years we have noted how much his Cerebral Palsy affects his little body. How tight his legs are, he cant straighten his knees or get his heels to the ground leading to contractures, hip problems and spinal curves. We have to try this and give him the best hope for a less pain, less daily medication and more freedom of movement.

SDR (selective dorsal rhizotomy) is a spinal surgery to essentially cut the nerves that are causing the spasticity and tightness in his legs. Usually, and originally, we thought we would have to fundraised 100s of 1000s of dollars, borrow and head to St Louis to see Dr Parkes to have this surgery - he is deemed the founder and "main guy" for SDR. We have talked to Jack's team at Westmead for years, hesitant and hoping we wouldn't have to put Jack through this surgery and the rehab that follows. As the years have gone by and with growth it is becoming harder for Jack's legs to keep up with him.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6502035/

When we decided yes we will push for SDR Jack was presented to a team of doctors in Australia who all think he is a suitable candidate. Then the news, the doctor who performed them resigned during covid and there is no one in Sydney. We were then told they were arranging a doctor from overseas and June 2022. International documents, hospital bureaucracy and travel arrangements meant more delays. Finally a date and with an amazing surgeon from the UK who has worked with Dr Parkes and things are moving.

https://timesofmalta.com/articles/view/Surgeon-easing-pain-of-cerebral-palsy-in-children.480174

We hate asking for help but we have to for our Jack Jack. We are hoping to take him to a therapy in QLD that uses a trexo machine to help train his brain for a walking pattern, extra therapies and any extra equipment he needs to get the best result! Helping Jack walk!!

The first 2 years after SDR are the most crucial and we will do our everything to do as much therapy and rehab as we can to get the best results.

Unfortunately NDIS will not fund any extra therapies in relation to the surgery and do not cover the medical side of his cerebral palsy.

So we have entered the Go Fund Me space - please don't feel pressured but any help to Jack and our family would be so appreciated. Living apart, extra rehab, extra therapies, changes to his environments - there is so much to come for him. NDIS will only fund so much therapy and they don't cover medical - they don't cover extra therapies or equipment that result from SDR.

https://www.facebook.com/watch/?v=2832397473486051 - this gives us hope and hope is all we have.

Jack has kicked CPs butt for years and will continue to work so hard but we just want to give him to best opportunity to do it as he continues to grow.