Thursday, September 15, 2011
Wednesday, July 27, 2011
The NDIS will make it easier for disabled, aged, palliative and sick people to access essential care, support, equipment, training and much needed respite.
The Northern Rivers community has been crying out for help for many years and now at last a proposal that will help so many residents that have been, and, are still suffering in silent anguish.
The Health system has for too long needed change to support all people regardless of their disabilities, and their families that provide care 24/7. Artemissia was palliative, in an ICU state, sent home to die. We fought Artemissia's disease ourselves with little to no assistance for 2 years and nearly had it beat, but we still "slipped through the cracks". We had no respite for the first 12 months, even then it was unstable, access to equipment and services were heavily bound by departmental red tape. Initially going from hospital to hospital (even Brisbane) on my own steam for syringes, lifesaving suction machines, hoses and tubes etc. Our life and home were far from everyday Australia, a nightmare. Our nightmare has ended but the pain from the experience has left us scarred forever.
The proposed NDIS would fund long-term, high-quality care and support for about 360,000 Australians with disabilities. The Northern Rivers has significant holes in respite services designed to provide back-up to people – usually family members – who often sacrifice their own quality of life to make the most of someone else’s.
We have a voice and by using it we can make sure the Federal Government accepts the recommendations of the Productivity Commission to introduce the NDIS.
As part of the campaign there will be 866 national DisabiliTEAs, morning tea parties on August 2, to promote the scheme. In the Northern Rivers there will be one in Alstonville at 253 Wardell Road held by Brione Steele. Another held by Tweed Valley Respite Services at Dungay. Petition forms will also be located at the Tweed Palliative Support op-shop in Murwillumbah, Tom's Pies in Mullumbimby, Valley Way Cafe across from the Murwillumbah railway station.
The people of Australia and the Northern Rivers, have the power and numbers to help push the scheme to reality.
Who will it be next? we didn't have a clue what we were going to go through.
Please support the campaign, all you need to do is voice your support by calling 02 9256 3106 or online at http://www.everyaustraliancounts.com.au/.
Wednesday, July 13, 2011
There is a drug called Pyrimethamine. This drug is used by doctors to treat specific types of infections called malaria and toxoplasmosis in children and babies. Laboratory test tube studies have shown that Pyrimethamine can help the Hex A enzyme to function in a normal manner. If Hex A can function normally in presence of Pyrimethamine, this drug should be able restore the brain malfunction of these patients since Hex A can now efficiently break down GM2-ganglioside with Pyrimethamine treatment.
Doctors afraid of litigation will not tell us about this because it is not FDA approved, like anything that is being trialed will not be FDA approved for 10-20 years, by then we would all have watched our children die, horrible painful deaths, while we stand by and hold their hands……
If anything can make a difference to these children of ours then it is worth everything.
I have attached the original Pyrimethamine treatment information for who ever is interested in trying to help their child if possible, (PYR-EET-07).
There are other attachments are from the World Lysosomal Disease Conference held last year in
They are finding that Pyrimethamine is also working on some of the mutations that they thought it would not work on. And although targeted at adults, it worked for Artemissia.
Professor Don Mahuran based at the University of Toronto and The Hospital for Sick Kids, Toronto and Professor Kolodny from New York University are two of the leading researchers on Pyrimethamine, and very approachable. NTSAD has all their details. Professor Barbara Shapiro is from the
Artemissia was born on the 12th September 2007.
We came home to wait out the end in Palliative Care just before christmas 2009, she was totally blind, deaf, mute and paralyzed, with a massive cocktail of medications that included Morpheine 24 hr, extra Morpheine, back up anti-convulsants etc. etc.
With adverse events daily, we were using a lot of medications.
Because of the late diagnosis here Artemissia's condition had totally destroyed her Central Nervous System totally, Artemissia was essentially gone.
In February 2009 Artemissia was close to dying, we began the Pyr treatment Artemissia was blind, totally deaf, totally paralyzed and on continual morpheine doses. We had no choice but to try or Artemissia would not have made it through the first half of 2009.
We had to wait 9 months for the mutation test results but Artemissia would not have survived, we put our faith in god and did the only thing we could, we started Pyr, and it worked. The mutation test came back and 1 of her 2 mutations was known to work with Pyrimethamine. It turned out that our faith and prayers were answered.
We started her on Pyrimethamine on the 6th of February 2009 and within 4 weeks we were having much fewer adverse effects, seizures or convulsions.
By July 2009 we had removed the daily Morpheine from the cocktail 2ml per week; we used none from then.
(I can send the spreadsheet showing the summary of those early days, if you look at it you see all the columns showing, medications, extra-meds, pain, and seizures, as the treatment took effect you can see those columns clearing with time, also I can send Artemissia’s first Daily Plan so you can see the cocktail of drugs in the beginning).
Artemissia was still on her daily medication regime for seizures, occasional anti-biotic for infections, but essentially much, much more stable.
By mid 2010 we had no more need for the Clonazepam (Rivotril), and by December 2010 the Phenobarbitone withdrawal was nearly complete.
With the Pyrimethamine stopping the progress of the disease we then had the task of restoring her Central Nervous System and managing her Respiratory system. The CNS was coming back as Neuronal Regeneration was occurring because as the disease’s progress halted, the body was repairing the damage. I studied what I could find on Neuroplasticity and applied some elementary exercises which helped begin motor skill re-development.
We were over the moon; the doctors here could see the improvements and were happy.
Artemissia could hear loud to medium noises, her eyes shone, no longer rolling upwards, she was so much more aware and she responded to light and colours more. The Pyr treatment and physio regime had worked wonders against the paralysis, her fingers no longer clenched unless she was squeezing our fingers; “foot drop” was easier to manage with feet looser and not so stiff.
The foot tremors from Clonus had nearly all gone, and she was making sounds like trying to communicate. Artemissia responded to love/cuddles with beautiful sighs. Even the Cherry Red spot in the macular had diminished significantly.
The secretions were easier to manage but build up of mucous in the chest was still the major issue and we kept her in the centre of our house with one of us by her side 24/7.
We rotated the shifts and she had a very busy schedule each day.
I have attached a day sheet so you can see how an average day was managed.
If we had known earlier about Pyr, Artemissia would not have so much damage to her Respiratory and Central Nervous Systems.
"DARAPRIM" is the MIMS name of the tablet that contains the PYR; we looked into the MIMS and saw the adverse reactions list, dosing recommendations etc.
Please remember that every person will be different in always, from the mutation itself to the current condition of each individual.
You can download a Daraprim fact sheet online.
I can also provide a copy of a day sheet showing how we gave her the PYR with Folic acid twice daily. PYR reacts with one of our anti-seizure meds, the Phenobarbitone, but we managed that by spreading the doses of Phenobarbitone and Pyrimethamine as far apart as possible from each other over the 24 hour daily dosing period. The PYR dose we have found should not exceed a rate of 1mg, per kilogram of body weight, per day, if that happens it will not work.
Splitting the dose works so much better than single daily dose, it stops any vomitting and works better because it has a working life of 4-5 hrs, after that it's not working for the rest of the day. So splitting it in half and giving twice daily gives us 2 peaks a day.
It must be given with Folic acid or Folinic acid which will be on the instructions. Artemissia reacted adversely to Folinic, so Folic works for her.
Each person is different but the basics are there, you just have to tweak things to suit each individual.
We always made sure that she had been back on her milk for at least an hour prior to giving PYR and this was given with lots of water, perfectly smooth on her tummy.
The PYR was a miracle to us, Professor Mahuran and his colleagues are legends. In our case he did not think it would work at all, and we didn't have Artemissia's mutations which were months away.
He had advised us, as doctors do, against using the PYR prior to getting our mutations analyzed, but we had run out of time, every day the damage continued, our gut said go, so we did, very carefully monitoring everything with the Day Sheets.
Unfortunately Artemissia’s Respiratory condition had progressed too far before we had a diagnosis and could find out about the Pyr ourselves, that Bronchial damage was what eventually led to our loss of Artemissia.
The Pyr is the most promising, least invasive, and it can keep children from deteriorating further until other treatment options can be further researched.
The more recent papers from studies in
Nothing to lose and everything to gain!
Sunday, June 19, 2011
Today was simply "the best", my angels visited us, we loved it, see, Miracles Do Happen.
Thursday, June 16, 2011
Tuesday, June 14, 2011
The sun shone on us today out at Eviron, Artemissia's resting place. I couldn't resist taking a short video to show how you beautiful and peaceful it really is. It's hard but you come to terms with it, realise it, and accept it. The hardest journey for any person. Words don't cut it!
Sunday, June 5, 2011
P.S. Dad is wanting to hold a DisabiliTEA in august to help the Every Australian Counts Campaign to push for the proposed National Disability Insurance Scheme. Maybe I can help others and bake some cakes!
Please check it out at www.everyaustraliancounts.com.au
Thursday, June 2, 2011
Monday, May 30, 2011
It's so hard, when Artemissia and I walked into the hospital, especially the ward where Anthony works, yep! the Banksia ward is full of children and babies, most with terminal conditions. The nurses and doctors there are fantastic, everyone is mufti or in costume, the kids love it and it is a very happy healing atmosphere. Had to let a few tears go, it rips me apart to see so many of Artemissia's friends. Tiny Dancer twirled around spreading her aura of love and comfort to all there, Artemissia reached out from our heart, it hurt us both, and reinforced my knowing that something will always hurt.
We will make change and save others from experiencing all this.
Wednesday, May 25, 2011
Such a strange feeling, to go from one extreme to another. To have a family, a life, someone to fight for, then............... I'm still on alert, brain racing, heart lost in a desert.
Who am I? Where am I? Where do I go? What do I do?
I'll figure it out. Just have to see what's next hey!
Monday, May 23, 2011
Our friend Hanson has moved to another position further away so last night Artemissia and I attended our first class of Lauren Tober's Yoga Meditation course that is intended to help people like myself. It was good and I hope it can help me to focus and pull the pieces of life back together. Artemissia loved it and met some really nice people.
It must have done something good because I am able to speak to you now.
This week we are travelling up to the Royal Children's Hospital in Brisbane to meet with one of Australia's leading Palliative Care specialists Dr. Anthony Herbert. Anthony is a really good person who helped us as much as he could with Artemissia. Unfortunately he is over the border in Queensland, distance and that invisible line made everything 100 times harder. Anthony has offered to help us in our fight for more awareness, information and support for patients and families affected by the Rare and Orphan diseases.
This will be my true healing, to help at least one more child and their family.
No-one should have to go through what we went through in this 1st world country.
In the words of Bob Wyborn from the ALD support group; "Artemissia is totally reliant on her parents who give her 24/7 love, medical teatments, feeds, physio, etc, etc. Of all the families I deal with in Queensland this is the one that is the most disadvantaged I implore you to consider this application with favour and give this family the great gift of hope and love".
What an amazing man Bob is, Bob lost his son Brendan in 1999 to Adrenoleukodystrophy. Ever since then Bob has dedicated his life to helping others. We were over the border in NSW and Bob would travel down 100's of klm to visit, bearing nappies and goodwill.
Advocating for us with total understanding.
Artemissia and I hope to be able follow in the footsteps of Bob and dedicate our lives like him.
Thursday, May 19, 2011
Artemissia's amazing love, understanding, strength and determination to live against all odds are traits seen in all these children, they know! "Born to die". Like someone's idea of a sick joke! These purest of hearts, need only love and nurturing. They understand everything, know everyone, giving all they have unconditionally, instinctively. You get to see into their souls, this privilege freely given. I know, I learnt sitting alongside Artemissia, doing all that we did to keep our baby alive, shift after shift, day after day, night after night, then laying in the next room, ears tuned to Artemissia's breathing and equipment, ready for the next emergency. I learnt how incredibly dependant, fragile and loving our children are. Tiny little hands reaching out only wanting to wrap around and console my fingers, knowing. Artemissia is my lesson. My most beautiful lesson.
Tuesday, May 17, 2011
Then Artemissia sat by my side on the grass, looked into my heart, and said:
"Dad, can you please thank everyone that helped us with my beautiful plaque and funeral ceremony.
Please thank Aiden and Oscar, they saved their pocket money to get me a christmas present. I had to leave early so they still put it towards my plaque, very cool kids hey! Dad, thank and hug uncle Charles, aunty Tammy, Yasmin(my big sister), cousin Dimitri, aunty Julia and uncle Terry, aunty Anne, uncle Mario, aunty Jade(Yasmin's mum), uncle Dave, Ben, Uli, Jutta, Jony, Jo, Nick, Bob, father Romanus and everyone else that helped and cared. Let everyone know that I have met many others here, just like me, we are all blessed and my new friends are so special. I love them all and you will meet them all one day.
Now Dad I have to dance and whirl, and twirl some more, this is so much fun."
Monday, May 16, 2011
Along with the Paua shell frangipani and the beautiful flowers sewn by Aunty Julia that she has sent us we can both relax and be happy that Artemissia has the most beautiful "Lei" of frangipani flowers an angel could ever want. Really in heaven. How do you find the words to express the millions of thoughts and emotions, your love, your pain, your loneliness and grief.
Impossible... words could never do. How do I tell Artemissia how much, we, everyone and I feel. Impossible...
Monday, May 9, 2011
P.S. When's Father's Day?
Thursday, May 5, 2011
I see myself shattering into billions of tiny specs, just like the universe and your stars. Some specks to be borne everywhere with you, others to be washed down through the mud to rest with you. How sweet the thought, to embrace your soul for eternity.
Thus it will be, we will be one when my journey is done.
Like the precious tears of blindness you blessed us with. When they came I would gently wipe them away with my finger tips and touch them to my lips, fused for all time, through all space.
Your little friends stand silently by your side, an army of angels, we feel the power and glowing love they send us. They understand, they are here to.
Wednesday, May 4, 2011
We visited Hanson, he helps us with our pain and understood what we saw and felt. We stopped and picked some more frangipanis for you. They always soothe your soul so much.
Feeling a need to visit our empty house, a world long gone but full of echoes. Inside right where your bed used to be we laid out your t-shirt for you to sit on and play amongst your flowers. I sat on the floor next to you reflecting on all we had seen. Memories bouncing off bare walls. Later you and I came to you and played on your grass with all the other gumnut babies. We watched the sun setting behind your mountains and slowly drove home, watching everyone buzzing by. Now you're in bed all snuggled up and warm. I kiss your eyes and you drift off to sleep in a world full of little angels and fairies, surrounded by love and peace.
Rest my angel, tomorrow is another day.
Monday, May 2, 2011
All fixed, what a great toy hey! It's been going and going. Now it'll be fine again for ages. Have all the fun you want princess. You can have a sunset party everyday, make all the noise you like, and beat me home all in one. Talk about extremes. Sunday was a pretty nice day at Byron and so many of your friends there asked about you. They're really happy and understand. We are very lucky to have so many wonderful mates. You always won everyone that met you, touched hearts, such a special breed you are one of the 'silent angels'. So many, yet so few!
Sunday, May 1, 2011
To sit and talk to you a while
To be together the same old way
That would be our greatest wish today
To hear you laugh, to hear you cry
Or just a chance to say 'Goodbye'
To say the things we couldn't say
That would be our greatest wish today
But all we can do is throw a frangipani on the water
Look for the sun through the rain
Lay a little frangipani gentle on the water
Remember how we loved you
To comb your hair, to lace your shoes
Buy some flowers, let you choose
A phone call when you're away
Just to see if you're ok.
by John Williamson
Sung by Wendy Mathews
Friday, April 29, 2011
Your little rock n' guitar needs some work after all this rain. 3 years now and it finally needs some love and care too. So amazing it kept going and going, playing the tunes you enjoy so much. I will fix it now and together we can bring it back to your side. We can play some tunes for everyone. Don't forget, when you left I packed your little keyboard as well. Yes, now I hear you practising your tunes again, music in the breeze. I see your little fingers running over keys. That is the sweetest melody of all.
Thursday, April 28, 2011
Wednesday, April 27, 2011
Always love you mummy. I sent some flowers see, our favourites and even got the sun to shine for you today. A special day for a special mum.
Hey dad, Bob got it wrong with his song, it should be "Daddy please stop crying".
We have the purest love of all, though we can't touch, see or hear, we "know", we feel each other deep in our hearts. Even when we come home each day and I see you kissing my pictures it tickles my eyebrows. You make me so happy.
Tuesday, April 26, 2011
Without One, There are None. There will be "a morning after" my Princess.
Sunday, April 24, 2011
Friday, April 22, 2011
Tuesday, April 19, 2011
Monday, April 18, 2011
Sunday, April 10, 2011
Tomorrow is another day, you and I will be by your side again.
Sunday, March 27, 2011
Especially two young brothers that had saved their pocket money to give Artemissia a special christmas gift, even though Artemissia did not make it to christmas.
Aiden (9 years old) and Oscar (5 years old) Dickson, both insisted that their contribution still help towards the plaque.
With this tear rolling down my cheek Artemissia & I thank you both. Your mum, dad, grandparents Terry and Julia must be so proud of you.
Maybe the world is becoming a better place and we are blessed to know you all.
Thursday, March 24, 2011
Words have been hard to find to express heartfelt love and pain.
Artemissia gave us the strength and courage to endure, friends gave me the strength of their wisdom, and with that strength the words flow.
Thanks to you Artemissia, your family, and your special Team A.
We love you unconditionally for eternity.
Sunday, March 13, 2011
Artemissia was the centre of our universe as all parents would understand.
Every day I take out fresh frangipani flowers, Artemissia's favourite. I can see her face as she takes in the scent of her flowers, relaxing in the beauty of the moment, I miss her so much, little fingers in my hand, gently teasing her soft eyebrows. All Artemissia gave and lived for, was pure unconditional love.
Sunday, February 6, 2011
It seems to get harder and harder, the pain does not go away.
It never will. I miss her with all my heart.
Artemissia taught us unconditional love, the most valuable lesson of all.
I have learnt much through this terrifying experience which, in hindsight feels like we had been treading water in a raging flood, holding Artemissia above our heads, not for a few hours or days, but for 2 years, constantly being smashed by the waves. Holding on, praying in vain hope for help, help that always was just out of reach.
Repeatedly destroying our hopes.
There has to a better way to help victims and families such as ours.
More understanding of the situation's needs and dangers is just the beggining.
If we do not learn from the lessons we will never really evolve as a society.
This will happen to families again and again.
If only one child or one family is saved from being cast into the raging flood then our experience will not be lost on the rocks.
I am now moving forward one step at a time.
My aim is to create a foundation, a legacy in honour of the lives of Artemissia and the countless children lost to these rare diseases, in particular Sandhoff and Tay-Sachs.
But "All" children are equally important, therefore initially I will do what I can to provide any help, whether it be information, or support, eventually the Artemissia Foundation will be able to provide funding assistance to aid families and research.
We must realise that rare diseases can affect any family at any time. It is
not just “something terrible that happens to other people”.
It is a very cruel reality that can happen to anyone, either when having a child or in the course of one’s own life.
Whose child or family will be next?
The prevalence of rare diseases is on the rise.
If we don't act now then we have failed all that have suffered in the past and those yet to suffer in the future.
THE WORLD IS CHANGING, SCIENCE AND MEDICINE ARE EVOVLING VERY QUICKLY AND WE ALL MUST HAVE HOPE AS NEW METHODOLGY AND TREATMENTS ARE BEING DEVELOPED.
We must work to help implement better management systems within the medical and government departments that are entrusted with the responsibility for the care and support of victims and their families.
One step at a time.
My first step is to try to create a website that provides useful links to affected families, links to research, support, funding, anything that may help.
I have started building a site, so please, if anyone would like to offer any information, advice or direction, email me at email@example.com
Artemissia gave us that HOPE and we must never forget that.
Every day is a new beginning
Thursday, January 27, 2011
Artemissia's memorial on Saturday was beautiful. Thank You to everyone that attended. Being surrounded by family, friends and frangipanis, Artemissia must truly be in heaven. Our own Father Romanos led us in prayer and song then we shared the traditional Kolivo. Artemissia looking down, why we are so sad? we will always miss her, little Artemissia you taught us so much.
I am still here
I am still real
You are all dear
Hold me close
Your hearts to heal