Beyond Strong. The Thing Is, Life Goes On.

Beyond Strong. The Thing Is, Life Goes On.

Meet Jazz from “Just Wingin’ It”.  A woman I am proud to have met.  Hers is a story of survival.  A story of why you should trust yourself and stand up for what you know, in your heart of hearts, is right. Even when all the experts say no! Jazz is the ultimate warrior, a mum and a friend you’d want on your side.  But the pain and trauma that this lady lives with each day is what makes her special.  Make no mistake, no mama would want to live her pain.  Yet, she gets up and moves forward, spreading the love. She teaches us how to stay true to ourselves, that it’s okay to not be okay and sometimes a big belly laugh is just what the doctor ordered. I remember the day, ten years ago. Splashed across the news was the reports of the most horrific accident you could be faced with as a parent.  Jazz’s children crushed out the front of their home as they came home from school, by the gate and brick pillar that was not reinforced properly. I remember the feeling of sickness that riddled my body. The tears that welled in my eyes. The hurt in my heart for that Mama and the horror story she was now living.  None of us knew the half of it as Jazz explains below, nor did I realise that ten years down the track that our paths would cross and that we would have the opportunity to strike up a friendship with many experiences and passions in common. Jazz is a woman to be admired. ...
As A Mum, This Is Something I Will Be Forever Proud Of

As A Mum, This Is Something I Will Be Forever Proud Of

Image by Mantrabond Update #3: Day 12, 8 July 2018 Ohhh, that feeling when you wake up every morning to an alarm reminding you it’s time for ORKAMBI! Seriously! I have one cool upbeat tune that plays everytime ‘O’ is due. It reminds me every morning of the path we’ve taken to now and of the amazing little PINK PILLS that are giving us hope… that and the undeniable fact that my boy has a fighting chance! GRATITUDE If nothing else of value has been achieved in my life, I know THIS is something I will forever be proud of. I get emotional every time I think about it. It has been some time since I did an update on Matthew’s progress, so here it is!!! You know the old saying, “no news is good news”… well, that is exactly how it is. Matthew is doing incredibly well. Every morning and night he takes those pills. Within the hour we know they have activated because he starts coughing. We do the physio (and he lets me help – YIPPEEE), sometimes there has been very little that has moved but most times like today, Matthew shifts heaps. Mostly it is dark and I do wonder if he did physio all day if it would keep shifting?! Matt is reporting that he is starting to feel better but it is very difficult for him to articulate what that means. I see a kid who is getting up earlier and sleeping less. A kid who is facing some of his fears and making more of an effort to push through those difficult...
Orkambi – Better progress than we could expect!

Orkambi – Better progress than we could expect!

Update #1: Day 3, 28 June 2018 Oh, Ohh, Ohhhh #ORKAMBI!!!!! Today is a good day. Matthew’s tolerance for Orkambi has been very positive so far. He started his full dose yesterday after his first day on a half dose was ‘unremarkable’ in terms of adverse side effects. It has been a busy time in here with many, many sets of observations, four lung function tests per day (only one today) and three lots of intensive physiotherapy to support the treatment and movement of sputum from the lungs. On admission, Matthew’s lung function was 56.2% (1.8 litres). It fluctuated slightly on day one and two between 55.3% (1.77 litres) and up to 58.76% (1.88 litres) for his last one yesterday at 1.30 pm. Today’s lung function has climbed to 60.78% or 1.94 litres. It is clear to me that when Matthew is doing his lung function tests that it is getting easier to get a bigger breath in. Something I have seen diminish over the last 6 or so months. Matthew is clearing gunk well and some patterns are forming that will help with establishing treatment plans at home. The doctors are delighted as are the physiotherapists. There are expectations of severe initial side effects including problems with his breathing and airways being constricted, nausea, cold-like symptoms and headache, yet these are present so far. Doctors believe, based on the research of others who are on Orkambi, that we could expect an initial and significant drop in his lung function too. This has not happened obviously with an approximate 5% improvement in just a few days, this gives us so...
The Big ‘O’ Brings New Hope

The Big ‘O’ Brings New Hope

Background The 26th of June 2018 marks a monumental day for our family.  It marks the first day of access to a drug that is otherwise unattainable for our son Matthew.  A drug that potentially can stop the progression of an insidious disease he lives with called Cystic Fibrosis. At the time of writing this article, the below message was written to our loved ones to announce our news. We have been waiting three years from the time Orkambi was approved for safe use here in Australia.  This is a drug that has a price tag of around $260,000 per person per year.  The Australian Government and Vertex (the manufacturers of Orkambi) have been at a stalemate, unable to reach agreement on a ‘fair price’ for people living with Cystic Fibrosis to access. In the same week, Matthew started access, a new application was presented to the PBAC – Pharmaceutical Benefits Advisory Committee to have Orkambi included for access on our Pharmaceutical Benefits Scheme. To date, we do not know the answer but know that in the United Kingdom, access was again denied and Vertex is now likely to pull out of the country leaving thousands without access.  Hundreds have died waiting, hundreds more will die wondering ‘what could have been’. This is our story. The Big 'O' Brings New Hope! Day 1 – 26 June 2018 Matthew Started His Orkambi Journey today. He is the first paediatric patient in South Australia to be granted access! Today marked a new day in the history of our family. Matthew started his journey on Orkambi. Yes, that elusive drug that promises so...
Does It Matter If Your Child Has High Or Low Functioning Autism?

Does It Matter If Your Child Has High Or Low Functioning Autism?

What’s the difference between high and low functioning autism – and why does it matter? Like many of you, I am a member of several different Facebook groups which relate to my role as a carer – in my case, groups related to autism. I saw a post the other day, written by a distressed mother of an autistic child. She wanted to know why we kept referring to our children as ‘high’ or ‘low’ functioning – she felt that the way it was used meant that if your child wasn’t classified as ‘high’ it made them not as good somehow… What followed were over 200 comments of what ‘high’ and ‘low’ functioning meant to everyone – and the range of responses was astoundingly varied. So, what is the difference? A quick Google search revealed the following top response: “People with autism are often described as being ‘high functioning’ or ‘low functioning’. But there are no such diagnoses in the diagnostic manual. This means that the difference between high and low functioning autism can, in many cases, be based on the personal perspectives of a practitioner or teacher”. Source: https://verywell.com Not exactly helpful, is it?! Let’s consider children on the Autism spectrum The general consensus from my research, is that children who are able to communicate well, are more aware of social conventions, can manage well in academic settings, and quite often appear ‘normal’ are considered ‘high functioning’; whereas children who have limited or no spoken language, look and sound different to their peers, and are less likely to be included in typical classes or activities in an academic...