Journey

Mobility – the ability to move or be moved freely and easily. 

The disability which has negatively affected Rory to the greatest degree in recent years, apart from secondary cancer, has been cerebellar ataxia.  Rory has calcium deposits in his brain as a result of high dose radiotherapy to treat brain cancer.  This has caused cerebellar ataxia, the inability to co-ordinate balance, gait and movement of the extremities.  We first became aware of it four years ago when Rory started struggling to control his legs.  Now he often struggles to control his hands for fine motor tasks.  His body also has an unconscious wobble which Sean likens to a praying mantis.  Praying mantis can’t see very far.  They sway from side to side to distinguish objects in the background and foreground of the image in front of them.  The cerebellar ataxia is a continuous source of frustration for Rory.  He has to walk with a walker which he often kicks with his feet and tips as soon as the ground is irregular.  Often simple tasks, like making a cup of tea, result in a mess.  You don’t realise how much our household and family activities are governed by the cerebellar ataxia until Rory is not around.  This morning Sean and Rory drove across to Dannevirke for a night with Grannie and Grandad Gardiner.  Colt and I headed into New Plymouth to explore Pukekura Park, Brooklands Zoo, The Gables and Pukeariki and do some shopping.  We were able to go wherever we liked without worrying about access, the condition of the surface, or Rory’s safety.  It felt both liberating and like something was missing.  Dane (Next Level Fitness) and I work hard to improve Rory’s strength and stamina.  He completes exercises, lifts weights, rides the air bike, rows on the rowing machine and walks as far as I dare to push him.  There has been a significant improvement but there is no treatment for the cerebellar ataxia.  I received a call this week from ACC.  It has taken them months to consider our Treatment Injury Claim for the brain calcification and cerebellar ataxia.  The woman on the phone told me our claim was declined, that what Rory was experiencing was an “ordinary consequence of treatment”.  I refuse to accept this.  The specialists at Starship have said the level of calcification is in excess of any child who has received radiotherapy and the cerebellar ataxia is rare and extreme.  We have a right of review with ACC and this may require a lawyer.  I am unsure as to what step we will take next.

Natasha was still away on Wednesday so I had to juggle my work days so I could support Rory.  Rory wasn’t thrilled about being stuck with mum.  Thankfully Jo was able to act as Rory’s companion yesterday to give him, and us, a break.  Rory and Jo attended an event for the Taranaki Deaf Club at Little Liberty Creamery, sampling the dessert and learning how some of Be Natural Soap’s products are made.  Sean, Colt and I went for a tramp at Parininihi Whitecliffs.  The highlight for Sean and I was hearing NI kokako call with the native forest birds.  For Colt it is always the trip back along the beach, bolder hoping, collecting rocks and shells and exploring the deep turquoise pools of water in the sand.