Will this too require the disabled child to fit a certain criteria having one of several syndromes or diseases to qualify. I'm wondering where this leaves the undiagnosed rare child with a debilitating illness and global developmental delays.
As my child’s growth and abilities change so too do her developmental needs.
This month alone physio and occupational therapists have discussed recommended and tried to source funding for the following equipment/aides.
A standing frame (to place child in an upright position weight bearing on hips and promoting core strength –RRP $4,842.00
A corner chair (to assist child in a seated position to promote head and neck control along with muscle tone. RRP $515.00
A wheel chair (to assist child in transportation safely to assist in mobility, posture and full body/head support $16,000.00
A ceiling hoist (to assist child in and out of bath tub and bed preventing strain and injury to the carer) RRP $7,000.00 (bathroom alone)
Disability comes at a cruel cost to those who can least afford it, the equipment required is only to assist daily lives, the luxury is the joy of moving forward in life and society.
those lacking funding will source charitable organisations and once funds are received the long waiting periods sometimes years will most often mean circumstances have changed, children have grown and that crucial piece of life changing equipment has already outgrown its owner
Which brings me back to my question… Shouldn’t funding be based upon the individual themselves rather than the diagnosis?
Our little girl was two months old when she had her first seizure, first they came fortnightly, then weekly and then daily, continuously!
she has had such extensive testing by some of the most highly regarded medical minds, her DNA sent across the world for research, to date there is little evidence to suggest an answer will come.
She is our little medical mystery, no one is able to pinpoint just where the seizures are coming from, why they present so differently or why they even occur. We are told the disease behind the seizures is what’s taking her away, although it's faceless, nameless and we may never know its identity, we are told children who display these signs are less likely to see their teenage years, the condition thought to be degenerative.
Our little girl is unable to sit, crawl, walk or talk she has low muscle tone poor head control and is medicated and fed through a feeding tube
our little girl continues to fight each day, and we continue to be in awe of every little fighter we have had the pleasure to meet, hear their story, their quest for a quality of life.
The child with a disability is a teacher, a believer, a fighter, a beautiful innocence and the most precious gift to this world deserving every chance for the best possible life.
Which again brings me back to the topic… of government funding.
We ask no more than anyone else for their child, just to live with some form of happiness and normality! This should not be so hard to fight for.
Please consider making the change to make every life count, our rare
Children need your help
Sincerely,
The family of a rare child with an undiagnosed syndrome and a hope for a brighter tomorrow
#NDIS #timeforchange #rare