The Eagles Syndrome Appeal:
Please support my book and eBook sales – we are urgently raising funds from my book sales so that my son can have life-saving surgery in Los Angeles. To support – Please visit the Resources/Bookstore 
page at :
http://gracegawler.com/Institute/?page_id=1892
We are trying to raise $60,000. Being a self-publisher means that I own my books – therefore I can donate the wholesale price directly to this cause – the remainder supports the Grace Gawler Institute.Please send this blog link to friends in your address book….. Together – I sure we can make this happen!
Apologies to regular blog subscribers for my lack of correspondence during the past few months; a personal and imperative family issue has been occupying much of my time – hence the subject of this blog. Trying to raise funds whilst respecting my son’s privacy has not been easy & we have tried many obvious avenues already without success. So – as time is ticking by for this beautiful young man - as the heading implies, desperate times call for desperate measures.
Some Background: D lives with me and has done so for 29 out of his 31 years – he entered this world at Yarra Junction, Victoria on a stormy August night in 1980 into a life that held severe health challenges. He remains my greatest teacher. Although D is no stranger to pain, watching his deterioration as he bravely manages the affects of Eagles Syndrome is a distressing daily event and so ironic, given my vocation is helping others. With personal finances exhausted from my own 13 year recovery – the funds required are not available. I continue to support in every other way I can. Surgery has a high chance of success, but the longer the condition is left – the greater the risks. D needs some action soon.
As a child, Specialists said D would never be able to hear. As with Ian Gawler, whom I married when he had a 2 week prognosis; harnessing the same tenacity, I doggedly pursued healing options for D utilising the best of complementary and mainstream medicine. D can now hear without aid and he has achieved many amazing things. I am very proud of him. As many of you know from 1997 over a 13 year period and after 20 surgical procedures I eventually regained my own health in 2003 following a successful bionic implant performed in Holland– a world first. (If you don’t know you can read about this in my Memoirs- Grace Grit and Gratitude or on my website).
I had been hoping to take a ‘breather’ from health related dramas – but it seems the universe has other ideas! About a year ago D began to be investigated for a
- Xray of Eagles Syndrome – note 2 long bony styloid processes (pointing towards spine)
stiff neck and jaw clicking. The outcome – he was diagnosed with Eagles syndrome – a rare condition involving calcification, thickening and lengthening of the styloid process (a pointed piece of bone that extends down from the human skull, just below the ear.) See Xray left. As you can imagine these extended bones create havoc.
A normal styloid process length is approximately 2–3 cm and serves as an anchor point for several muscles associated with the tongue and larynx and other facial structures. Eagles Syndrome is diagnosed if the overall Styloid length in excess of 3 cm. In D’s case both styloid processes are grossly elongated … 6.5 cm and 5 cm! This excessive length has caused havoc with jaw and facial nerves and shoulder spasm; but not only is it painful, the growing styloid processes have alraedy caused severe compression of both jugular veins.
Without surgery, D’s carotid arteries could be damaged/dissected – or he could suffer a stroke or even death. The longer the condition is left without intervention – the more difficult the surgery and the greater the risk of post surgical problems due to the crucial nerves and vascular structures affected by the growth. Eagles Syndrome also affects the nerves to the heart-another related complication because D was also born with a severe heart murmur – heart valve defect (bicuspid valve).
Having exhausted specialist opinions in Australia including the famous Dr Charlie Teo (who was tremedously helpful with no charge for his opinion); as I had done with own condition; I began to regularly scan the medical journals into the wee small hours of the morning, month after month searching for an expert surgeon. Various opinions interstate, in Singapore, Germany and the USA took time and led nowhere until a couple of months ago when I discovered Cedars-Sinai department of trauma and neurovascular surgery in Los Angeles, USA.
The International liaison nursing staff at Cedars-Sinai hospital have been amazing. They searched for a resident specialist vascular surgeon who could perform this delicate surgery. Unbelievably – he had operated on two patients with Eagles Syndrome last year. Once removed the processes do not grow again. We are now in dialogue and he wants to operate sometime in October!
My previous 20 surgeries and lack of income for many years, finds me in a position of not being able to finance D’s surgery. Our Appeal is a win-win. By purchasing a soft cover book or eBook you will be making a contribution to D’s essential surgical procedure.
Email me for more information: institute@gracegawler.com
If you can help us meet the needed $ target for D by purchasing one of my books – Please visit the Resources/Bookstore page at :
http://gracegawler.com/Institute/?page_id=1892
Please lend a helping hand & email this gracegawlermedia blog link to friends in your address book. Thank You!
Together – I am sure we can make this happen!
