· Luke is suffering from Cushing’s Syndrome, a rare disease, where a tumor in his body is causing the production of too much cortisol.
· Luke has been undergoing testing for 18 months to find the source tumor. It is vital that doctors find the source, to spare Luke from any unnecessary surgery.
· Doctors have made the heartbreaking discovery that Luke has a benign tumor the size of the tip of a pencil on the pituitary gland in his brain.
· However, there is also some evidence that he could be the rarest of the rare and have a second ectopic tumor, which is controlling the pituitary tumor.Luke’s condition is so rare that it does not occur in children in Brisbane very often (around once every 10 years).
Is there a cure for Luke?
The only known cure for Cushings Syndrome is to remove the tumor. In Luke’s case the source tumor is proving very hard to find and therefore Lady Cilento Hospital is working with the world leader in Cushings syndrome treatment - the National Institute of Health (NIH) in the USA.
Luke’s family travelled to the USA for testing and possible brain surgery last year, however, the source tumor could not be clearly identified, so it was decided it would be wise to wait for 12 months to allow the tumor to show itself.
Luke is currently on medication that puts pressure on the tumor to grow, but it also puts pressure on the rest of his system especially his liver.
He will be undergoing a full range of intrusive testing in September 2018 in an effort to finally identify the source.
If the benign brain tumor is confirmed as the source, Luke and his family will travel back to USA in November 2018 for brain surgery.
If an ectopic tumor is found to be producing the high cortisol, then they will have surgery (hopefully in Australia) and once this is taken out, his brain tumor should shrink.
Why do we need to raise funds?
If the source tumor is coming from Luke's brain, he and his family will need to relocate to the USA for at least 5 weeks for brain surgery. However, if a second tumor is found, Luke will need surgery here in Australia.
Sts Peter and Paul’s Primary School P&F Assoc. together with the local community and beyond would like to help raise money to contribute to the costs associated with either of these situations. Please help us to find a CURE for Luke.
- Vicki Doggett
- Siobhan Otmarich
- Suzette Jefferies
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