Penny has Ehler Danlos Syndrome plus a bunch of other Syndromes that come along with it. After years of trying and a number of miscarriages due to the condition she finally has a successful birth with our little boy Ted. Although the pregnancy was a tough one that came close to killing her and almost lost Ted at the last hurdle when he was born early via emergency C-section at King Edwards Perth in September 2012, we didn’t think she could fall pregnant again but it’s happened and Penny is now struggling through her second pregnancy, another little boy. Our photo is from our first pregnancy and we’re been told to expect a similar pregnancy this time around!
The fallout this has all had on our family has been great, both Penny and myself are suffering from depression and struggle financially. We struggle to afford the Doctors and medicine Penny needs, we struggle to get Ted the life he deserves and struggle to get ourselves ready for baby number two. We’re struggling with rent, with the only place we can barely afford around and hour and half travel time from my work. We are also over an hour’s drive from King Edwards Hospital where Penny is receiving care for baby two and we know we need to move closer to the city, to the hospital to ensure we don’t lose the baby and to get the care and life Penny and Ted need plus for me to get closer to work but we just can’t afford it. We behind in our bills and have massive debt we just can’t get out of, I’m already working as much as I can and even if Ted was in childcare, Penny can’t work with her conditions.
Along with Ehler Danlos Syndrome she also has Postural Orthostatic Tachycardia Syndrome (POTS), Scoliosis, Osteopenia, Fibromyalgia, Depression, and a long list of allergies. With things like EDS and POTS inheritable we still don’t know if Ted or baby number two will continue down this line as their still too young to find this out and our budget just can’t get Penny get the treatment and care she needs from the number of specialist Doctor’s etc we need for Penny to live some sort of a normal life.
EHLER DANLOS SYNDROME
Ehler Danlos Syndrome is a group of inherited conditions that affect collagen proteins in the body. People who suffer with EDS dislocate joints on a daily basis, have stretchy skin, loose joints and fragile body tissues. Collagen is what holds our bodies together and supports various body tissues. It’s found in tendons, cartilage, ligaments, bone, skin, blood vessels the gut and spine.
A lot of people who suffer from EDS have a life expectancy into their 50's and some die much younger due to vascular issues, cardiology issues and are prone to haemorrhaging in the body especially in the brain due to ballooning of arteries EDS is a degenerative condition and there is no cure. Most people with EDS use a wheelchair, walking aids and have support braces to prevent dislocations. Operations can be life threatening even minor surgery.
POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME
Postural orthostatic tachycardia syndrome (POTS) is defined as an abnormal increase in heart rate on becoming upright. There are many causes. Although blood pressure does not necessarily fall, symptoms are similar to low blood pressure and can consist of dizziness, fainting, headache, sweating, shakiness, nausea, poor concentration and memory, discoloured hands and feet, sense of anxiety, chest pains and many others - mostly worse when standing. Treatment can consist of high fluid intake, care with posture, careful fitness training and, in some patients, high salt intake and medication.
My name is John and I’m a full time employee in the city, full time carer to Penny, father to Ted and soon to baby two, family Taxi driver to appointments, shops etc, grocery shopper, home cleaner and maintance guy! I’m worked to the max, stressed, depressed, sleeping only a few hours a day and haven’t had time to myself in years and with no end in sight of our to get out of our troubles, get help and try live some sort of life.
I don’t like asking for money but we got to the point where I don’t know what else to do!! The money that is raised will be used would actually be a life saver, to get Penny the care she needs, to help our sons and to help get out of financial trouble.