Recently, a beautiful French woman by the name of Pati (you’ve got to check out her amazingblog) approached me with a desire to help our financial situation due to high cost of healthcare in America. Having two children with Muscular Dystrophy means they need to access that healthcare system on a daily basis. She wanted to offer her artistic talents to help raise funds for our frighteningly large medical bills. Her offer literally brought tears to my eyes – she completely blew me away. I was so touched by her kindness and generosity. Since I have spend a good part of the last twelve+ months finding ways to take care of these huge bills in a way that wouldn’t involve bankruptsy, I felt that we were actually in an ok place right now regarding those bills (sortof) and that the place where additional funding could most benefit our children at this point was The Muscular Dystrophy Association of Western Australia. The NeuroSciences lab there is at the forefront of cutting edge research in muscular dystrophy. Even though the clinical trials happening there right now are for the more common Duchenne’s Muscular Dystrophy, I believe the science behind the trials (exon skipping) the most likely to have an impact on our children at some point down the road.
Look how amazing she is! Pati put together two digital scrap kits: The Love Kit and Merry Christmas Kit just for us. She is amazing. You can download these for free with the hope that you may give a donation – large or small – to the Muscular Dystrophy Association of WA in return. Many thanks to Pati and many thanks to you for supporting a cause so precious to me.
We, the people, sent you to Washington DC to speak for us and to help make our lives better, not to drag your feet in endless healthcare debate. We are counting on you to saves our lives, now. Congress, DO-YOUR-JOBS. Insurance Giants, BUTT-OUT – quit your dirty bullying and the spreading of misinformation (otherwise known as ‘propaganda’, yes that’s right America, you thought only ‘the bad guy’ countries did that didn’t you, but we are victims of it here in the US too…)
A special thanks to this congressman who is doing his job: Representative Alan Grayson from Florida who, after reading the latest adult mortality studies released two weeks ago said, “how can I make this better.” And then the amazing part – he actually set out to do just that. This guy has a backbone the likes of which has not been seen in Washington for years. YOU-FRIKKIN-ROCK Mr Grayson. You frikkin rock… My tears fell as I heard you speak with truth and a commitment for change, sharing the stories from the dead.
Please, write to your congressmen today and ask them to support real healthcare reform, now. The new figures from a Harvard study published two weeks ago show that 44,000 Americans die needlessly each year because of lack of access healthcare (many of those have insurance, as many of you know, insurance doesn’t really work when you get seriously ill because it’s all about maximizing profit thereby minimizing help). This figure is up from 18,000 the last time I researched the topic a year ago. Having been almost completely destroyed emotionally and financially by the seriously flawed excuse for a health’care’ system here in the US, change can not come fast enough for me.
I needed change yesterday; last month; a year ago.
And I have to say that I haven’t felt like my local congressmen have been listening to me and learning from my real-life experiences of having two sick children and living in this once great nation. In fact, I know they haven’t been listening because the form letter response I got from one of them was on a completely different topic than what I wrote him – didn’t exactly instill confidence.
I really hate to say this but America is not as great as it used to be – it’s broken and in my view, so much of it’s mess can be directly related to bad, bad, expensive, non-accessible, highest-reason-for-bankrupsty health’care’. It is an absolute mess here, economically, politically, in many ways culturally and definitely socially.
I need my congressmen to listen to my experiences dealing with the highly inflated cost of medical care, how it destroys families who are already destroyed from having illness in the home and how insurance companies have grown completely unaffordable to most middle-Americans – you know the ones who haven’t had a raise since the 90’s because of how much health insurance is ripping off their employers – and have fine print to get them out of almost anything. The only people that seem okay with the status quo are government employees with health insurance paid for through middle class taxes, people lucky enough to work for huge corporations who can negotiate cheaper insurance because of their size and people who havn’t been screwed over by a system designed to bring the most powerful country in the world to it’s knees – yet. Haven’t been screwed over yet. They are either healthy or have only had relatively short illnesses. And yes, The United States of America is on it’s knees, a country cripped and broken.
How dare a diabetic with a life-long daily illness have to pay $600 a month for the medicines to keep him alive and then have to ask the pharmacist which one is the most important and skip the rest.
Is America too arrogant to look to the rest of the world for ideas on how to make this better? Is American too consumed by greed and the culture-of-suing to not see how it is breaking this country?
Suing a doctor for not being God – I mean, how dare your doctor be human - oh, you have a bill that is going to bankrupt you after a delivery that turned complicated ending with a two week stay in hospital? Well, that changes things completely. Okay then, I guess you have no choice but to sue otherwise you will end up on the streets with no home and even less access to healthcare for your sick child; self; parent; sibling; loved-one.
Can you see how the current system encourages the suing culture?
A Canadian lawyer said it beautifully on my friend Loralee’s blog – “…as a lawyer who has defended physicians in medical malpractice suits north of the border… With a single payer system as in Canada, if I break my leg when I slip on your sidewalk (which may be due to the icy sidewalk, or to the fact I wasn’t paying attention), I go to the hospital and my leg is taken care of without any cost out of pocket. I could sue you and we could fight about whose fault it is for years, but unless I have lost any income, I probably won’t. Similarly, if I have an infant who needs substantial medical care, in the US I may have no choice but to sue my OB/GYN for any number of things: issues with the delivery, failure to diagnose before birth, even potentially the failure to advise me so I would have the opportunity to abort the fetus or not get pregnant in the first place. When people have significant medical costs they often have no choice but to turn to litigation. With “socialized” medical care, the costs of caring for that child are covered, thus turning to litigation becomes less of a necessity.”
Many doctors have to pay $100,000+ each year for malpractice insurance. How do they pay for that do you think?
It most certainly is the most vicious of cycles.
Do you know how encouraging it is to see a congressman stand up strongly for serious healthcare reform NOW and not back down from Insurance Company bullying tactics and Republican backlash? Please ooz some of this vibe onto my Utah congressmen… please…
Yay! Obama, Obama, he’s our man, if he can’t do it… well… that ’s too depressing to think about.
I can’t be happier hearing the most important politician in America talking this way. He is pretty much giving the bird to powerful insurance companies trying to kill reform at any cost. I feel like jumping up and down with pom poms cheering him on towards the finish line of real health care reform in America.
I have been asked to help collect delicious recipes for a massive Cure Congenital Muscular Dystrophy fundraiser. They are putting together a classy recipe book and need mouth-watering recipe donations. Can you guys email me or post your favourite recipe(s)? I know that some people have ’secret’ recipes, but think about sharing those too for a really good cause (except for you Kelly, I still think you should be packaging and selling your brownies world-wide – you would dominate the world brownie market. Keep that recipe a secret for sure ;)
But for the rest of you, please share!
I will be sharing my Fudgy Yummy Carrot Brownie Cupcake Recipe and my mum’s Caramel Slice Recipe. Oh, and her Carrot Cake TO DIE FOR Recipe. Oh and DEFINITELY Cyndee Hamilton’s Lasagna from my days working at the Perth Mission Home… How about you guys? Anything delicious come to mind? I would love to see recipes flooding in from my friends all around the world. What a diverse bunch of deliciousness that would be!!
The Cure CMD team is working so hard to get more funding into research and raised awareness for the plethora of Muscular Dystrophies that fall under the congenital (from birth) umbrella. Isis and Phoenix fall under this umbrella and I was approached by the foundation after they stumbled across my blogs last year. Many of the people behind the scenes of the CCMD foundation are parents of children with CMD themselves and are, in my view, supermen and women. As many of you know, having a sick child and living in America is a financial nightmare on top of the heartbreak of having a sick loved one. I tip my hat to these amazing people who find the time and emotional strength to do so much more than look after their precious children.
So will you guys email me something delicious to pass on? Let me know if you don’t want your name on the recipe.
Thank you!!
Love Jaz xox
PS Have a look around their beautiful site. To make a donation, click the donate button below or visit the Cure Congenital Muscular Dystrophy site. Every dollar counts, whether large or small. Much love and appreciation xox
Credit Card / PayPal
To donate to CureCMD via credit card or PayPal account, please click below. Note that if you wish to pay via credit card, please follow the “continue” link to the left of the Paypal login box on the next screen. The blue “continue” link is under the heading “Don’t have a PayPal account?” On the paypal screen after entering your credit card information, there is an additional line on which to add a Donor Message if you would like to make your donation in an individual’s name. To set up recurrent donations, contact pat.may@curecmd.com
Since moving back to the US, we have had to make difficult decisions based on the cost-of-care, that has compromised both the short-term and long-term health of our two children. Due to the inflated health insurance premiums we were paying – premiums that provided less than 5% of their daily healthcare needs – coupled with the providers expensive deductibles, co-pays and ‘out of pocket’ fees, major stress and worry for our future compounded the worry already felt in a home that has two children with a rare disorder. The compromises we have had to make in the last year may have saved money initially, but ultimately, cost more down the road. For example: My three-year-old daughter was eligible for the RSV shots last winter because of the high risk of respiratory failure the virus posed to her. Unfortunately, we had to literally turn the deliveryman away at the door upon discovering the cost was $3,300 for three shots. Her deductable was almost as high, so even with insurance and having the shots ‘approved’, we would have had to pay the full amount ourselves. My stomach churned at the thought of having to turn the shots down, as my son almost died of RSV when he was three. Several weeks later, she was admitted to intensive care with Respiratory Failure and was ventilated for two and a half weeks. The cost was almost her life, and a $100,000 hospital bill.
Our Previous Medical Care Issues:
There is no roadmap for the family or physicians where rare illnesses are concerned.
We very quickly became the doctor and nurse to our children. We learned to fight for the care they need and suggest possible treatments because the doctors just don’t know what to do and what to expect. As young, new parents, our days saw us writing the book on RSMD. Figuring the disease out, alone, the hard way. Imagine the worry of seeing a beautiful baby waste away without a clue as to why; Seeing his file put in the too-hard-basket; Living in a dark cloud of fear and worry because there are no answers why and no clue what was to come.
Multiple hospitalisations, traumatic resuscitations and ventilations – our lives became something we could never have imagined. These beautiful children, with amazing talents and personalities, typical in every possible way other than their bodies refusal to work properly.
It took five years to find a diagnosis and even then, there were no research papers, doctors or specialists that could tell us that our children will most likely die before their prime, or will develop crippling scoliosis as they grow needing multiple spinal surgeries before they even hit their teens. There are no roadmaps for us or for our doctors. We have had to write it, map it out, from hard, sometimes near-death experience; through trial and error. And more recently, through meeting a family who had all four children with the same disease. I understand that this is the way of rare diseases. But it is very difficult to live through.
My Hopes For The Future
I used to wonder if my children would be able to marry, have children, lead relatively normal lives as adults. Even the doctor who knew most about this disease in the world couldn’t answer these questions for me. I know now. I know that they may not live long enough, or have the independence, or the strength. They will hope for it and wish for it though, just like we all do.
I don’t think about this anymore. Now my thoughts are consumed with how on earth we are going to pay the next hospital bill. I fret over how we are supposed to pay for their tube-feed supplies when it costs more per day to feed them than the average middle class salary earns.
I wish I didn’t have to think about this side of things, but it is the reality for us at the moment. I would like to be thinking about loving them, caring for them, keeping them as healthy and as strong as possible. I resent the amount of time trying to get them the healthcare they need has been taking me away from them. I wish for less worry in life, for continued research about this disease and the gene affected and I wish to see them grow up happy and content in their own skins.
I am still laughing over this, and I am allowed to!! Oh it feels SO GOOD to LAUGH over a topic that usually has me pulling out my hair or wishing I was a drinker!!! English humor is the funniest in the world to me. Oh I miss all the english shows on TV at home in Australia. (American’s, if you are like my husband, you may have to watch this more than once to understand the accents… and the humor ;)
Happy 11, 680 days to me. Gee, that’s a lot of days on earth. If I live that many more, I’ll be really happy. Do I have a few more wrinkles than last year? Yeah, but who cares, that’s just what happens. Am I cuddlier than last year? Heck yeah, but as long as I don’t have breast cancer or heart disease, I don’t mind. Am I happy? No, not really (she admits guiltily). I am definitely in survival mode at the moment, having just separated from my husband of eight and a half years (not something I have wanted to talk about with anyone or on my blog). It has, in reality, been a rocky roller coaster of a year this year. Some days have been really, really dark and hard. Add to the marital dramas settling in to a new country with a very different culture, a healthcare system in shambles (and two children who desperately need a healthcare system that works), in a community that is quite closed. I have felt pretty alone. Do I regret moving here? Sometimes, recently. But, oh well. It can only get better from this point.
I spent my birthday today alone (bliss), watching Star Trek on my laptop (bliss), in bed (noice!), with a sore tummy (not so nice), eating Tennille’s Tim Tams (probably the reason for my sore tummy, since I don’t have a gaul bladder to digest them – but sooo worth the cramps haha) and checking out Kelly Rae’s new website (be-eee-autiful). Tomorrow, I paint all day! Another whole day to myself while the children are in Nick’s tender care, and I shall spend it in an uninterrupted world of creation.
All day.
And maybe go for a walk.
All by myself.
Noice – as they say in Australia.
The highlight of today was definitely Phoenix calling me on Skype and singing ‘habby barday hoo youuuu mummy’. What a smile that brought to my face. Thanks for all the birthday wishes everyone xox It means so much.
I can’t stop crying. This was the absolute last thing I was expecting from a politician in a position of power when I watched the President’s press conference from yesterday. I reluctantly clicked the link, expecting the typical transparent excuses so often heard from the lips of politicians regarding real healthcare reform in America. I have written letters to every congressman in the state of Utah and also to the President and had grown so discouraged by standard political response, I had to stop talking about healthcare change. It was too painful to see and hear ignorance all around me. It filled me with complete hopelessness feeling like I was one of the only ones who could see what was really happening with US healthcare. I felt thoroughly discouraged. I had to stop sharing the struggle that we face on a daily basis having sick children and living in America. It is too real of a topic to us and until congress had walked in my shoes, I felt there would never be change.
As I sat on the couch this afternoon, looking out the window and wondering how on earth we were going to make it here in the US with already more than $100,000 in medical debt [and having just received a facebook email from someone vehemently against 'becoming communist' (eyeball roll)], I noticed a message from Obama linked to his press conference of yesterday. After 15 seconds I began balling and continued for the other 54 minutes. And I almost didn’t watch it. I was sure there would be no good news for us in there….. oh how I was wrong. Thank you Mr. Obama. Thank you for reading the letters we send you and for actually listening. Thank you for being open minded enough to review the facts, not the fears. Thank you for rising above the ‘Ignorant American’ stereotype. Thank you for being smart enough to distinguish HMO propaganda from reality and for not buying into the Republican back lash. Thank you for putting us ahead of your career – something very rare in politics despite it being the job description. Thank you for lifting some of my despair. Thank you…. for standing up for those of us who are too sick and too tired to have a strong voice. Thank you thank you thank you thank you thank you… xox
It is comforting to hear some serious public talk in agreement of how I view the broken US healthcare system. Please watch this segment of Bill Moyers Journal and then pass it along to everyone you know who has bought into the falsities Insurance Companies have fed us for decades regarding the US healthcare system. Educating ourselves is the only way to bring about real change in this country. I feel so discouraged at the attitudes surrounding me at times. I have received letters from Congressmen that mirror Insurance Company verbage – we need to hold our congressmen accountable. They need to be educated as well as we do. Our congressmen also need to not give in to the threats given to them by the Insurance Industry, for supporting change. It is too important of a topic to be pushed aside. Please watch this and let me know what you think.
I am finding it difficult to adjust to how different, complex and innefficient the healthcare system is here in the US. It causes me great sadness and anxiety having to deal with it as often as I do, with two children with Muscular Dystrophy. A cardiologist asked me today, “why on earth did you leave Australia?!” I responded while shaking my head, “I know, I know.” I could hear a slight Canadian fleck in her voice – she has no doubt had experience in a health care system similar to Australia, and knows that this, the United States of America, is not the place to be if you are sick. I told her, as I do everyone who asks that question, “We came here for all the other reasons – definitely not the healthcare system…”
There are many reasons to love this place – it’s diversity, it’s amazing landscapes, it’s sense of adventure. But, there are many ‘buts’. So much poverty and so much greed. So much ignorance disguised as patriotism. So much potential, so many bad political decisions. So many people dying needlessly because they can’t access the care they need because of the ludicrously high cost of healthcare…
I stumbled across this picture just now, of beautiful Phoenix looking so happy after a nightmare of a sleep study. An untrained technician on minimum wage was the sole person in charge of operations and it made me nervous to the point that I doubt the sleep study results and have not changed the settings on the children’s bi-paps. I miss you Princess Margaret Respiratory Department in Perth!! Your beds may not be as posh as the sleep study beds here (whose pointy edges gouged my thighs each time I got up through the night), but you are professional, caring, genuine, trained and you do your job well… It is not about, ‘how much profit can we make from Jasmine and her unfortunate circumstances today?’ It is all about, ‘how can we help your beautiful, special children be healthier and stronger…’
In eight months of being here in the US, we have accumulated more than $100,000 in medical bills for the children and this keeps growing by more than one hundred dollars each day. It would have been much more if we hadn’t brought so many supplies and equipment with us from Australia and hadn’t been the recipients of so much love and charity from others. Even the wealthiest of the wealthy could not keep up with have sick children in this country. When medical care cost on a daily basis, insurance companies are unaffordable and have fine print to get them out of almost anything. Did you know that more than 18,000 Americans die needlessly each year because of the the inflated cost and inaccessibility of healthcare – even with insurance? And did you also know that despite this being the United States of America, we are listed by The World Health Organization as being ranked #37 in the world for healthcare and yet we spend more per capita than any other country on healthcare? The US should be number 1. Given our technology and wealth, we should at least be up there with all the other first world countries (who by the way, all have universal healthcare paid for through taxes which I have experienced and loved, loved, loved.) The government should be hanging their heads in absolute and utter embarrassment and shame at how poorly their citizens are looked after, at how most bankruptcies are health-related debt and at how US citizens have been lied to for generations about better health care alternatives being ‘evil’ or ‘communist’. Come now! Tis a little ignorant. Please let me tell you that there are other ways that are better and cheaper.
I heard a quote a few months ago on change.org that went something along the lines of: ‘if we can find the money to kill people, then we can find the money to help people.’ I know it is a touchy topic, but the broken healthcare system effects us on a daily basis. I have never experienced stress like this in my life. I am literally turning grey and wrinkled at the age of 31. I have researched heavily into the topic, I have spoken at the capital, I have written a plethora of letters to our government representatives, but there is so much fear of change and so many pockets that are sweetly lined by the wealthy profit-driven insurance companies. (The ratio of HMO lobbyists to congressmen in Washington is something like 3:1) It is quite thoroughly discouraging, especially when all the figures show that switching to a medicare-for-all type system like every other first world country is pretty much a no brainer. The US is in the perfect situation right now to look at what every other rich democracy has been doing, what is working well, what isn’t, and create something very effective for the US.
We are so dependent and grateful for charitable organisations like Shriners and the Assistive Technology Lab at Utah State University. They are very literally life savers for us.
We love Shriners Hospital for Children! It is such a peaceful and generous place – it hits you the moment you step through it’s doors. There is a warmth in the air that puts worried parents at ease and make anxious children smile. We were back there yesterday getting Phoenix’s back brace and orthotics fitted. The children love going there because everyone is so kind and sweet to them. It is so important in situations like this that the children feel comfortable, safe and special. They hear everything that is going on and have a lot to bear on their little shoulders. I remember when my son started losing his hair from the worry that he held bravely inside. It is too sad that these little angels have to know so much seriousness when all they should know is the carefree freedom that comes with childhood. I must confess, the stickers and special treats help the load seem lighter – we are talking the coolest stickers and prezi’s ever. Barbie stickers, Batman stickers, My Little Pony stickers – the best of the best! I think it is so wonderful how people donate treats to hospitals like Shriners – thank you, whoever you are! It puts a bright spot on our sometimes serious and worrisome visits. It gives the children a lovely distraction and something special to look forward to.
Thank you Shriners and thank you to everyone that donates money and goodies to help make Shriners such a wonderful place of care!
There is something magical and calming taking a drive through a town blooming in the happy colours of spring. I decided to take the scenic route to my friends house for dinner this evening, after our Shriners appointment… and it was soooo beautiful!!! The colours and flowers of spring take my breath away! What a pretty season. And you know, I think I may say the same thing about summer and autumn, just like I did with winter and now spring… :) There is so much beauty all around us *sigh*. We don’t see the distinct seasons as much back home in Perth, so I am savoring every moment of the treats each season send our way.
I can’t stop crying. This was the absolute last thing I was expecting from a politician in a position of power when I watched the President’s press conference from yesterday. I reluctantly clicked the link, expecting the typical transparent excuses so often heard from the lips of politicians regarding real healthcare reform in America. I have written letters to every congressman in the state of Utah and also to the President and had grown so discouraged by standard political response, I had to stop talking about healthcare change. It was too painful to see and hear ignorance all around me. It filled me with complete hopelessness feeling like I was one of the only ones who could see what was really happening with US healthcare. I felt thoroughly discouraged. I had to stop sharing the struggle that we face on a daily basis having sick children and living in America. It is too real of a topic to us and until congress had walked in my shoes, I felt there would never be change. 
