Zebra Heard
Lifesaving Surgery Fundraiser
For
Julie Peterson
When you hear hoofbeats, think horses, not zebras.
But, very rarely, what you’ve heard really is a zebra!
In the medical field, the Zebra has become a symbol for rare conditions, leading several rare disease communities to adopt the Zebra as their official mascot.
Fundraising goal: $300,000
As Julie’s condition is deteriorating, it is imperative that surgery can be undertaken as soon as possible.
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After a 40 year battle
for answers…
….Julie was finally diagnosed with a collection of rare conditions.
Put simply, Julie has a rare connective tissue disorder (Ehlers Danlos Syndrome) which gives her further very rare complications making her ligaments too weak to hold her skull to the vertebrae in her neck efficiently. This results in her brainstem being stretched and crushed by these unstable, moving bones. This causes devastating and painful symptoms in every body system.
Julie also has a related condition called Occult Tethered Cord Syndrome where the spinal cord is attached to the inside of the spinal column and gets stretched causing many further symptoms.
This condition, left untreated, leaves Julie vulnerable to dying if her skull or vertebrae dislocate in a direction which either causes pressure on essential body function areas (such as breathing, heart beat modulation, and more), an internal decapitation (where the skull completely cuts through the spinal cord severing all connection between the brain and body but contained within the tissues of the neck) or damage to other essential body function areas of the brain stem. Not having surgery would also mean life long intense pain and a life spent in bed.
This surgery is Julie’s last treatment option.
These surgeries are her only chance to live a life without pain and illness for the first time since she was 10 years old. The chance of severe and debilitating injury or death from spinal and spinal cord injury will be effectively removed.
Julie was excited and relieved to discover that a treatment was available was immense. Sadly this was shortly met with despair when she came to realise the costs involved. The sum is impossible for her to raise after 9 years without working.
40 years of severe illness and 10 years in the equivalent of lockdown with no view to any escape from pain, sickness, and the isolation of being too ill to leave her bed and the house can come to an end but only with these surgeries.
Specialist experience is required not only due to the rarity of the condition and the surgical procedures, but due to the complications which EDS poses during surgery, the combination of conditions Julie has, and the surgically difficult location of several major blood vessels and nerves unique to Julie.
Anaesthesia and post surgical pain management is also needed to be tailored as regular approaches are not suitable for patients with these conditions. Opioid medications usually used for post surgical pain management have very little effect on Julie. Fortunately, Dr Gilete is a world leader in post surgical pain management in EDS patients.
Why the Zebra?
Although not curable, Julie’s conditions are treatable with three specialist surgeries as rare as the illness itself, and therefore very expensive.
Due to Julie’s rare connective tissue disorder, this procedure requires surgical experience, techniques, and sub-millimetre precision which are unique to people with this disorder.
Two surgeons worldwide perform these niche, specialised, and individualised procedures. They are located in the USA and in Spain.
Julie has selected Dr Viçenc Gilete at the Medico Centro Teknon Hospital in Barcelona, Spain. Not only are the skills and experience of this surgeon inline with Julie’s particular conditions but also the price is around ¼ of that in the USA.
New Lives After Surgery
Some post surgical patients of Dr Gilete came together to celebrate their wonderful results and their new lives.
These are their stories.
Different combinations of conditions were presented by each of these patients. Most of the ladies in the film have had the CCI surgery. The causes of their CCI differ from each other and from Julie but the same surgical approaches are used. Trauma, EDS, and other causes are represented.
Julie will have her surgeries staged in two or three separate surgeries. Each spaced by a few months. She cannot return after the times mentioned in this film due to the distance from Australia to the hospital in Spain if there are any post surgical or recovery time complications. The ladies in this film are from The Netherlands and so a short plane ride away should there be any complications.
This is subtitled in English.
Some post surgical patients of Dr Gilete, from The Netherlands, came together to celebrate their wonderful results and their new lives.
The specialist surgical theatre for hypermobile patients with CCI, AAI, AAS, and TCS. Centro Médico Teknon Barcelona, Spain.