Elliot has a chance to beat Cushings Disease with your kind donations, helping him get the medical treatment he desperately needs.
Canterbury
Elliot has just turned 16.
Up until the age of 10 Elliot was a normal sporty fun loving kid and into everything. Soccer was his passion. He was as skinny as a rake and full of beans with endless energy winning player of the year for his club 3 years in a row. By the end of 2011 he started to complain about being really tired and by mid 2012 had gained twice his weight and was unable to play soccer as his feet were in constant pain. Noticeably Elliot hadnt grown any taller in a full year.
The first paediatrician mis-diagnosed him with a 'slow growth rate' ignoring all the other signs, and while we waited for Elliot to grow, his condition worsened. In the next 2 years, after seeing doctors and specialists. visiting the hospital for many blood sampling tests and MRI scans, he was finally diagnosed with Cushings Syndrome at age 14.
Cushing’s syndrome is a rare condition that is the result of too much of the hormone -Adrenocorticotropic (ACTH) in the body being secreted from the pituitary gland. This in turn causes the adrenal glands to produce too much Cortisol.Too much cortisol inhibits normal body growth and causes a large amount of weight gain especially in the face. neck and central body, high blood pressure, changes in memory, mood and concentration. It also causes the ligaments, muscles and bones to weaken (as in Elliots feet) due to protein deficiency.
In Elliots case, a small adenoma (benign tumour) was found in his Pituitary Gland at the base of his brain which was the cause of the over production of ACTH and hence too much Cortisol. He was finally able to have surgery in November 2016.Unfortunately after 3 weeks in recovery, the surgery was deemed unsuccessful.
Elliot is still in full Cushings state. Elliot is now 151cm tall. At the age of 11 he was 147cm. He has only grown 4 cm in five years.
Following a second opinion and more testing, we now have a crucial chance to get Elliot further treatment to beat this condition. We need to raise funds for the treatment and for the latest drug available to assist him in the process.The surgery (or radiotherapy) is estimated around $10,000 -$15,000 AU.
The drug is the medical treatment used when surgery fails or while waiting for radiotherapy to take effect. The cost of this medication is $2000 AU per month.Elliot will need these monthly injections for 12-18 months. This drug is FDA approved but is not funded in NZ or Australia.
As his parents, we are desperate to help our son beat this destructive disease as soon as possible.
If Elliot is left unaided he wont be able to grow and will eventually develop organ failure.
With your kind donations and by sharing this page, he will be able to beat Cushings Disease and have a chance to do all the things other teenagers are able to do at 16 and thereafter.
Our humblest thanks in advance.
Desiree and Shane Latham
The money raised will go to Elliots surgery/radiotherapy and drug assistance.
Updated 3 May 2018 3 May 2018
On 24th April, Elliot received his radiotherapy treatment at the Prince of Wales hospital in Sydney.
It was a two-day process, involving MRI and CT scanning, then a mask made to hold his head in place for the treatment. He was very brave and is feeling positive while the long wait begins to see if the treatment worked. With the assistance of chemical drugs from now on, it could take 12-24months, and we're hoping for the best.
We, his family, would like to give everyone a massive hug and SO many thanks for the help you have given us.The treatment simply wouldnt have been possible without kind souls like you, especially the last influx of wonderful people who helped us reach the radiotherapy target on time.
We will keep this page open and update you on Elliots progress along the way.
Our kindest thanks and regards,
Desiree and Shane Latham
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