Blog

Hunter syndrome gives a new meaning to Mother’s Day.

10/05/2015 15:07
Mother's Day is one day of the year that is celebrated around the world. It’s a day where mothers are honored by their children. But what if you are a mother of a child with Hunter Syndrome?  What if your child doesn’t even understand there is a celebration, let alone the meaning of that...

When should a parent stop fighting to save their child?

10/12/2014 13:18
Hunter syndrome is ultra-rare genetic condition affecting 0.6 in 100,000 births in the world. Hunter syndrome occurs when an important enzyme the body and the brain needs is either missing or is not working properly. There is no cure for hunter syndrome and most sufferers will only live to see...

When should a parent stop fighting for their special need child?

09/12/2014 13:54
When should a parent stop fighting for their special need child? Hunter syndrome is ultra-rare genetic condition affecting 0.6 in 100,000 births in the world. Hunter syndrome occurs when an important enzyme the body and the brain needs is either missing or is not working properly. There is no...

A little boy who is always smiling (getting ready for IT clinical trial)

14/08/2014 21:05
Christian has been sick for nearly two weeks. He has had bronchiolitis, an ear infection and the flu.  We moved house and while we were unpacking he accidentally stepped on a steel plate and cut his foot badly. This was very difficult for him and us because he didn’t want to keep his dressing...

Idursulfase IT trial & LSDP Australia

03/06/2014 16:51
We are very pleased to advise that all negotiations have been very positive with regards to issues raised to us by the biopharmaceutical company Shire in regards to the Intrathecal Idursulfase IT trial for Australia. However we are unable to disclose confidential information and discussions about...

New LSDP Guideline for MPS-II patients (access to treatment)

28/05/2014 23:12
GUIDELINES FOR THE TREATMENT OF MUCOPOLYSACCHARIDOSIS TYPE II DISEASE (MPS II) THROUGH THE LIFE SAVING DRUGS PROGRAMME   In May 2013 I wrote about our fight to get our son Christian reinstated on the Australian Life Saving Program (article is provided below). I talked about the unfair and...

Intrathecal Idursulfase IT trial Australia

20/05/2014 23:17
Christian Dierkx’s parent, Rob and Michelle Dierkx have been doing a lot of work over the past week to refocus attention on the Intrathecal Idursulfase IT trial for Australia. As this is such a critical and lifesaving medical breakthrough treatment for their son and other sufferers. The Dierkx’s...

Many MPS-II patients now have some hope

17/12/2013 23:27
I am grateful that out of all the companies that develop drugs for MPS sufferers, Shire is the only one that has developed a treatment (Elaprase) for Hunter Syndrome. Though not a cure, it does extend the life of patients, and gives most a better quality of life. I know Shire is a business and all...

Shire makes positive steps toward a trial site in Australia

01/12/2013 06:38
About 6 months ago we successfully won our appeal with the Australian Federal health department for the reinstatement our son Christian’s lifesaving treatment after an arduous 16 month appeal process. Once that battle was over I began thinking about the next step in his life. You see I never gave...

Fear paralyzes but faith gives Hope

30/11/2013 23:03
  I was lying in bed at 3am in the morning and I could not sleep. I began to think about how overwhelmed I have been. I decided to play my favourite worship song ‘falling in love with Jesus’ by Jonathan Butler hoping it would get me back to sleep. But it didn’t, I realized I have been running...
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Christian's progress on ERT

How he is doing?

Christian has made much progress since been reinstated on ERT. He has started saying a few more words. Even though he still can’t hear well and refuses to wear his hearing aids he understands much of what you say to him. During the school holidays I persevered with his toilet training and it took...

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We are pleased to provide an update on the progress of the Intrathecal IT trial for MPS-II. The trial site selection has now progressed to the next stage and currently going through the “eligibility assessment” for running the trial. Shire is also consulting directly with the LSDP has now provided all the information recently requested by them.

We are in regular contact with Shire and our local Federal MP who is communicating with the Federal Health Minister. We have been informed that the clause in the LSDP guideline that doesn’t allow children currently receiving intraveneous ERT to participate in the Intrathecal IT trial is just a misunderstanding. It is now in the progress of being confirmed in writing that this is not an issue. We will report on the final outcome of the trial with the Channel 7 program in late July or at date to be announced. The program will report on the work that we have been doing from when we initially approached Shire in the United States 12 months ago until now and the struggle to save our son.

The next focus for us post the intrathecal IT trial will be to find a cure for our son.

 

News

Christian Dierkx finally has Good News

20/10/2015 15:53

Our 7 year old son Christian is the victim of government red tape.

25/10/2014 11:07
We appeared on the Sunrise program on Monday 20 October. Below is the link to the story. https://au.tv.yahoo.com/sunrise/video/watch/25298086/life-saving-drugs-denied/ Just some background information about Christian and his fight for life.  Christian was diagnosed with an ultra-rare genetic...

12 months today we began seeking treatment for MPS-II sufferers in Australia

12/07/2014 20:17
   This week marks an important milestone, it is one year ago since we first embarked on pioneering a clinical trial for hunter syndrome patients in Australia. The trial known as Idursulfase IT is very important for sufferers of hunter syndrome with the more severe form given that the...

Final report on Idursulfase IT Trial ( final outcome to be reported on the Channel 7 program Australia)

21/06/2014 09:15
We are pleased to provide an update on the progress of the Intrathecal IT trial for MPS-II. The trial site selection has now progressed to the next stage and currently going through the “eligibility assessment” for running the trial. Shire is also consulting directly with the LSDP and has now...

Intrathecal clinical trial Hope is on the horizon

22/03/2014 07:11
In July 2013 we requested the pharmaceutical company Shire HGT in the U.S. to consider Australia for the Phase II/III MPS-II Intrathecal enzyme replacement trial. This clinical trial has been ongoing in the USA and the UK for a couple of years and Shire has recently began recruiting patient in...

Shire Makes Decision about Intrathecal Clinical Trial for Australia

09/01/2014 22:40
Our son Christian has hunter syndrome (MPS-II) which is a debilitating and life threatening metabolic genetic condition. He is only expected to live to his early teens without treatment. I am a person of faith so I refuse to allow this disease to take my child. But I also realize that ‘faith...

Health Minister overturned decision by her department and reinstated Christian's elaprase

18/07/2013 01:26
Campaign success for sick boy Rebecca Trigger, The West AustralianMay 28, 2013, 12:16 pm             Michelle Dierkx and 5-year-old Christian. Picture: Steve Ferrier/The West...

Christian's elaprase success story - Federal MP Steve Irons

18/07/2013 01:22
Latest News Current Articles | Archives | Search Swan Electorate: Hunter Syndrome Posted on:Wednesday, 19 June 2013   I am pleased to be able to inform the...