Power to the children

I am the mother of four wonderful children who all have neuro-diversities and/or rare disorders. Seth is twelve and currently lives with my mum. He has recently been diagnosed with a rare disorder called Usher Syndrome. Unfortunately, this leads to blindness and deafness, and there is no treatment or cure for it. Add to that, he also has dyspraxia, adhd, and sensory processing disorder. Anthony is eleven and has AUTS2 syndrome - also very rare and is the cause of a lot of his disabilities including the moderate intellectual disability, heart defect and sensory issues. He is also being investigated for metabolic issues and is on daily blood sugar testing. Jacob is five and has just started school. Through the last five years, it has been suggested that there are neuro-diversities - supported by his preschool and now school. Evelyn is almost two and the baby of the family, and she is also showing signs of neuro-diversities.

This is where we need your help! For the last twelve years, my kids have been let down by the medical and education systems. Because of the nature of their disabilities, they have slipped through the cracks, been misdiagnosed, mistreated or ignored. Jacob has been denied an appointment 4 times by child development service despite referrals coming from his GP and plunket. Seth has also been declined further assessment through cds which is an issue - he was seen when much younger and given a diagnosis that is no longer recognized of PDD-NOS. because of this, CDS says he falls under the autism spectrum BUT other services refuse to acknowledge it because it wasn't a direct autism spectrum diagnosis. He also needs a cognitive assessment so we know how to help him learn forms of interaction that will assist him when he loses his vision and hearing. Because of the problems I have had getting the boys seen, we have given up trying through the public system.

This year I have approached several charities and the universities for help - everyone I have approached has been unable to help because we dont meet the right criteria, or the kids are too complex for someone not fully qualified. I have finally found someone who is willing to assess the kids, but the cost is phenominal at $1500 each. Anything donated will go towards paying for these assessments and anything left over will go towards extra therapies and support, and for making memories with Seth before his world goes dark and silent.