Oscar and Felix's condition is expected to be untreatable and most likely will result in a shorter life expectancy for both of them.
They have both undergone a full genome exome and lots of testing on blood and spinal fluid and nothing has shown up yet and it could be years before we they have a diagnosis.
Felix & Oscars developmental age is 6 months, physically they are about the size of 1 year olds and they have some intellectual capabilities including the cheekiness of 2 year olds.
They roll and commando crawl to get around. They have done a full genome Exome on Felix’s DNA after doing an MRI, lumbar puncture,urine and took lots of blood for testing last year.
The MRI showed that he has less white brain matter than he should. Oscar will be having the same tests this year that Felix had in the hopes that now they are a bit older something may show up.
A team of doctors are working on finding a diagnosis including a Pediatric Neurologist, Geneticist, Palliative care team all at the John Hunter Hospital and a Metabolic Geneticist from Sydney’s children’s hospital. They are currently testing the boys saliva for metabolic conditions and also their parents blood to see if that shows that we are carriers for anything that is recessive in them that may of been passed on to the boys.
They are receiving physical and occupational therapies for them as well as a Speech Pathologist through the Cerebral Palsy Alliance funded by the NDIS as well as some equipment needed for feeding the boys and to assist them with standing and walking.
However there are toys, equipment and supplies they greatly need that are expensive and not funded by the NDIS, including:
• Orthotic foot supports which are $150 for each foot. $300 a pair so The total cost will be $600
• Switch enabled toys that start at $80 each and go up from there * We would love to get a scooot mobility rider and walker for each of the boys which are $1500 each but will enable them to get themselves around and be easier for them to enjoy going out places like the park or to friends houses and help them play with other kids their age.
They are also trying to save up for a deposit to buy themselves a home so that they can make modifications to the house in the years to come to suit the boys condition.
These incredible, strong and resilient parents have done this for so long on their own and not the types to take free help or ask for it which is why we have taken this on for them. Now with COVID-19 Impacting their lives the less time these angels have in hospital the better and every little bit will help.
- Ian Caelli
- Sarah Roxby
- Neil Upton
- Grant Harland
- Alyssa D’Ugo
Organizer and beneficiary
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