Our Journey

I am Alex, the father of a beautiful baby daughter with Sandhoff Disease, a rare form of Lysosomal storage disease, similar to the Leukodystrophy in Lorenzo's Oil (the movie). Artemissia was the only known case in Australia. At 6 months old the first signs of this aggressive disease began to emerge. We went to the doctors thinking it was a reaction to immunisation but no-one knew. We waited to see a neurologist but the disease was advancing. One day before her 1st birthday she went floppy. Our nightmare had begun, and even though Artemissia passed away more than 2 years later on the 13th of December 2010, the nightmare continues today. A family no more. Here you see a father's journal, emotions and thoughts. barely a glimpse of the reality, but enough.

Thursday, December 30, 2010

Grieving dad vows to fight

27th December 2010

THE father of a toddler who died after more than two years battling a terminal illness says he will continue to fight for other families facing the affliction.

Alex Alexiou said he would push for improved access to treatments for rare illness' Sandhoff’s disease as well as improved cross-border co-ordination and help for families caring for someone who had these rare illness'.

Mr Alexiou’s three-year-old daughter, Artemissia, died on December 13 from respiratory damage caused by Sandhoff’s disease in the months before she was diagnosed in 2008. Her funeral service was held at Murwillumbah’s All Saints Anglican Church last Thursday.

In the months before Artemissia’s death, Mr Alexiou and his wife, Kelly Ryan, had been struggling to get enough respite care support to help look after Artemessia, who required 24-hour care.

Mr Alexiou said he wanted to make sure that did not happen to other families.

“Things have to change; there has to be more co-ordination at a ministerial level (between governments),” he said.

Mr Alexiou had also helped pioneer new treatments that had helped Artemissia fight off Sandhoff’s disease.

She had improved dramatically before her death and was regaining her senses of sight and hearing.

Mr Alexiou and Ms Ryan had been preparing to bring in speech therapists to help Artemissia learn to speak.

However, the damage to her respiratory system had been irreversible.

Mr Alexiou said he also wanted to help set up systems to encourage early diagnosis and treatment of the illness so such irreversible damage could be avoided.

Thursday, December 23, 2010

Goodbye Sweet Angel

Tweed parents lay girl, 3, to rest
Alex Easton | 24th December 2010



God's angel: Parents Kelly Ryan and Alex Alexiou with Fr Romanos at the service for their daughter Artemissia.

ONLY two days before the world celebrated the birth of the baby Christ, Alex Alexiou and Kelly Ryan laid their baby to rest.
Artemissia entered the world in a blaze of hope and joy on September 12, 2007, but slipped from it on Monday, December 13, after little more than three years of life.
Mr Alexiou said his daughter died from complications stemming from her two-year battle with a rare illness called Sandhoff’s disease.
Standing before the small white casket that contained Artemissia’s body at yesterday’s funeral service at Murwillumbah’s All Saints Anglican Church, Greek Orthodox priest Father Romanos told mourners the efforts of Artemissia and of Mr Alexiou and Ms Ryan’s to defy the doctors’ predictions had inspired all who knew them.
Speaking after the service, Mr Alexiou said Artemissia had inspired him with her fierce will to live. By the time she passed away she had beaten Sandhoff’s disease and was busy recovering her hearing, her sight and was even on the edge of learning to speak.
But she could not beat the damage done to her lungs.
“She was an inspiration and she was here for a reason,” he said.
Ms Ryan said Artemissia had “transformed many lives” and would continue to do so.
“She represents every element of love you can imagine and more,” she said.
Fr Romanos told mourners Artemissia had taken her place as one of the stars in the heavens and as one of God’s angels.
“She will remain with us for the rest of our lives,” he said.
“Her life didn’t go to waste because, even though she might have had only three weeks or three months, she was still here three years later and that was a miraculous feat.
“Alex and Kelly, you did a phenomenal job to raise her and bring her to this stage.
“It was a difficult and rewarding job and all of us around you felt that hope you brought to this girl and to us.”
Mr Alexiou and Ms Ryan, backed by Ms Ryan’s mother, turned the front room of their Burringbar home into an effective hospital ward for Artemissia where they could give her 24-hour care.
They struggled to get respite support from the Federal Government, but got strong support from their community, including fundraisers conducted by the Burringbar Sports Club last year, a makeover of their home done by the Combined Murwillumbah Rotary Clubs a few weeks ago and donations and messages of support from across the Northern Rivers.

Precious Angel May You Rest In Peace

It is with profound Sadness, Pain and Sorrow that I must inform all you wonderful friends and supporters that today we laid to rest our precious angel Artemissia.
Thank You
for your care and support....

In Loving Memory
Artemissia Avalon Alexiou
12.09.2007 ~ 13.12.2010

Precious little girl
With your long golden hair
In just a few short years
You had so much to bear.

Precious little angel
With great big loving eyes
So gentle and so trusting
We now say our goodbyes.

Precious little poppet
With your heart of gold
You'll be forever with us
Your story will be told.

Precious little Missy
We really shouldn't cry
Cause you're dancing
with the fairies
And God's angels up on high.

Precious little girl
We love you so we cry
Be forever in our hearts
Goodbye, Goodbye, Goodbye.

Julia Dickson



Wednesday, November 24, 2010

HAPPY BIRTHDAY AUNTY JULIA

Dear Aunty Julia, Honey and Poppy and I have been having a little birthday party for you.
Dad got us all some of his frangipani flowers so we could all look beautiful for you.
I fell asleep because it was such a big party so Honey and Poppy looked over me like Angels. Thank you so much for sending them to protect me.
They are both doing that good a job that I am now down to only 2ml in the morning and 2ml in the evening(of the Phenobarbitone stuff), Howzat!



Honey just told me that Uncle Terry is taking you away on a fishing honeymoon, you are so lucky, he is an angel just like you. Please relax, have fun and catch lotsa fish. Do not worry about me, Poppy and Honey will look after me.



See how pretty the frangipanis are, we got the picture you sent of yours, wwwowww!
Happy thanksgiving, Happy Birthday for saturday and Happy fishing, just be as happy as I am. We sent you heaps of love and glitter. then I had to rest, big, big day.
Thank You for all that you have done you are both AMAZING.
Lotsa hugs and kisses to you both, my special Guardian Angels, XXXOoOoXxXxXX

Wednesday, November 10, 2010

Phenobarbitone withdrawal progresses well

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It's been a hard day and Artemissia fell asleep with her boots on. The Phenobarbitone is now down to 4ml morning and 4ml in the evening, from the original daily doses of 18ml morning and 18ml in the evening. No adverse reactions or even any signs of serious withdrawal symptoms. That is so good, we are so very proud of our baby aussie battler.
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Artemissia is responding to tickling with general limb and torso movement increasing, slowly but surely.
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Piano lessons are still on the daily routine. Move over Beethoven, Artemissia is here.
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Nebulising and Chest Patting to help move the mucous up from her lungs is done several times a day, keeps her airways clear and oxygen levels up.
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The sleeping princess is just beautiful.
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Honey and Dolly rocking in Artemissia's arms.

Wednesday, October 27, 2010

Good Girl Artemissia

Artemissia is showing more signs of awareness and movement as the Phenobarbitone withdrawal continues.
So far we have had no signs of seizures or discomfort due to the decrease in her Pheno dose.
The daily dose is as of last monday, the 25th of October is 16ml, down from 36ml daily.
She is appearing to be slowly shaking the hypnotic effects of the Pheno, fingers, hands, arms, legs, feet and toes are slowly moving with more intent, showing much more resistance through physio and, she is turning her head a little.
Her eyes are more focused and "knowing". She is so brave, it makes us so proud to be her parents.

This week we were contacted by a family from Bulgaria, with 18 month old baby Luiza also diagnosed a few days ago with Sandhoff, every time I hear of another my hearts breaks again.

Artemissia now has found others like her, suffering Sandhoff and Tay-Sachs, all wonderful, brave children.
Dakota, Kaydence, Steven and Thomas in the USA, Camille in Belgium, Hugo and Ayah in Sydney, Sophia in Saudi Arabia, so, so many more out there.

Being in their presence is amazing, their silent auras full of love and hope.
WHY? WHY? WHY? All children are so special, WHY must they suffer?
They are here to help others, stop the suffering of so many generations to come....

Truly Blessed and Guided by Angels

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Monday, October 18, 2010

Big hand, little hand, just amazing to hold

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Awareness and responsiveness are both slowly increasing as the Phenobarnitone is slowly withdrawn, and, she is doing perfectly well.
After the first 3 weeks of withdrawal Artemissia is as of today at 60% of the daily dosage she was on. She has had no discomfort or seizure activity, that is brilliant.

Last week she had her upper back molars and her top left eye tooth finally cutting their way through, this brought on some high temperatures and increased secretions. Because she can't speak to tell us how she feels, identifying things is very difficult but we try to make sure that we look at everything from every angle, not forgetting that she is still a growing baby going through all the normal physical changes, apart from her diagnosed condition. She does not masticate therefore the teeth are much slower to break skin. So many facets, all equally important. Constant monitoring, observation and recording allows me to distill all the facts properly and safely, we really "keep a finger on her pulse". It is our labour of love.

Most may think we have drawn the "short straw" with this situation our family is in but we stay strong, Artemissia is our baby and our responsibility, we are her parents and would have it no other way, it is our purpose.

It is late now and my shift here next to her is nearly over tonite, but it is so wonderful to hear her breathing calmly and deeply as she sleeps so much more peacefully than before.

Wednesday, October 6, 2010

I love this, I'm getting stronger.

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Week 2 of the Phenobarbitone withdrawal, we are removing 10% of the original daily dose each week, monitoring and if all goes well then we continue.
Artemissia is appearing a fraction more aware, present and responsive.
It's only early days yet but Artemissia will show us.
We have to agree that Artemissia is improving and in much better condition than she was prior to the treatment.
Who says that Medicine and Love don't mix?

I'm trying hard

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Mum giving me a workout

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Monday, September 27, 2010

Team A Patience and persistance promises to bring Artemissia back

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Artemissia is bravely fighting her way back and the most elementary things are going to be the most important for her future development.
Daily Dummy training is slowly but surely getting her tongue moving. She is going to need it to speak and to swallow.
Once she is able to swallow Artemissia will be able to clear her own throat from the choking secretions and hopefully get food down.
That will eliminate the need for the nasal tube we now use to feed, medicate and hydrate her.
That is what we are aiming for and we know that we can do it.

We have come a long way since we came home from hospital to spend our last days together at home.
From a daily cocktail of drugs, including; Morpheine, Midazolam, Chloral Hydrate, Clonazepam, Phenobarbitone, plus, plus.
We have been slowly withdrawing drugs as they become unnecessary, especially as the Pyrimethamine appears to be stopping the disease from progressing and allowing Artemissia's body to heal.
Now apart from the Pyrimethamine treatment she is only on Phenobarbitone the last anticonvulsant.
Well today we have begun the withdrawal process of this drug that has kept her in a state of permanent hypnosis, depressed senses, decreased motor activity, Central Nervous System and Respiratory Depression, Cardiac arrest(to name a few of the side effects, even death).
We have faith that this will go relatively smoothly, by christmas the withdrawal will be finished and Artemissia will be able to come out of the drug induced shell she has been living in.
Her developmental milestones will become much more achievable.

We are coming to get you out!

Wednesday, September 8, 2010

A bit of an ode to all mums, dads and nanas

Against all odds Artemissia will be 3 years old on sunday. Her strength, love and trust in us has kept her here. She knows that at least one of us is always watching over her and tending to ever need. Without the Pyrimethamine Artemissia would not be here, but, even with it she would not be here now if it wasn't combined with the love, care and dedication of Team A, mum, dad and nana that makes her treatment complete, she knows, therefore she fights. Stopping the progress of the disease is one thing, but, keeping her alive from minute to minute because of the damage caused up till we could stop it is major. The demylination caused major seizures that mostly destroyed her central nervous system, affected her spinal cord, and most major organs. The lungs are the biggest problem as we have to help keep her clear of the mucous and phlegm build ups that threaten to choke her. One of us, mum, nana or I have always been by Artemissia's side, 24 hours a day. We are exhausted but thankful that our prayers are heard and that ever so slowly Artemissia is improving.
Sleep deprivation took it's toll a long time ago. We are physically, mentally and emotionally drained, even so the joy we feel to see her sleeping peacefully between suctions, her contentment when being cuddled, the look of peace in her angelic face when deeply sleeping, or even her increased strength and resistance during physio, these are the greatest, proudest moments that you could ever imagine.
Hard to imagine and impossible to cope with but we do, Artemissia is our universe. We are just a mum, dad and nana not doctors or scientists. We are just normal people, but we are Artemissia's family and she our baby, so we do what we need to. We have met many wonderful people on this journey that we love immensely for their care and support, but as a dad I have to say that the efforts of caring and treating her, watching her every breath while the world sleeps, unable to see daylight, selflessly pouring their love and affection into Artemissia, this is the key to the Pyrimethamine working, she knows she has something to live for, love.

Saturday, August 21, 2010

Rotary Clubs Renovation Rescue

Wonderful news, the Combined Rotary Clubs of Mount Warning AM, Murwillumbah Central and Murwillumbah have joined forces to conduct a renovation rescue on our home. Painting, repairs, and extension with some "special needs" alterations to help care for and manage Artemissia.

The renovation rescue will be covered by Channel 7 News.

The combined Rotary Clubs are looking for assistance with building products, windows, paint, volunteers or any help that can be spared.

Local businesses are rallying to the cause already, Richard Cuskelly from Duraplas Tweed has supplied a water tank being installed by plumber Phil, and, David Bjorkland from Beyond Building Technologies has arranged for a grid connected solar electricity system to be installed.
Both donations wil help us with the high daily costs of power and water, and, help the environment.
We are so grateful for the care and support that we have been shown, from our friends and next door neighbours to total strangers.

We would not have made it this far without all you Angels and pray for your continued care and prayer.
If you can provide the combined Rotary Clubs with any assistance for this project then please contact Lyn Sullivan,the President, Rotary Club of Mount Warning AM on 02 6677 9071 or Dennis Hallworth on 02 6677 9302.
Our Thanks to Anne Simpson, Chris Chrisostomos, Jack and all the members of the Combined Rotary Clubs for their efforts,this is wonderful news and much needed.

Even in our darkest moments Angels have shone and lit our way.
Thank you all for sharing your light.

Thursday, August 19, 2010

"The Pink Dress" author unknown

Don't let your day go on without reading this first, no matter How busy you may be!!

The Pink Dress
There was this little girl sitting by herself in the park.
Everyone passed by her and never stopped to see why she looked so sad.
Dressed in a worn pink dress, barefoot and dirty, the girl just sat and watched the people go by.
She never tried to speak.
She never said a word.
Many people passed by her,but no one would stop.
The next day I decided to go back to the park in curiosity to see If the little girl would still be there.
Yes, she was there, right in the very spot where she was yesterday, and still with the same sad look in in her eyes
Today I was to make my own move and walk over to the little girl.
For as we all know, a park full of strange people is not a place for young children to play alone.
As I got closer I could see the back of the little girl's dress.
It was grotesquely shaped.
I figured that was the reason people just passed by and made no effort to speak to her.
Deformities are a low blow to our society and, heaven forbid if you make a step toward assisting someone who is different.
As I got closer, the little girl lowered her eyes slightly to avoid my intent stare.
As I approached her, I could see the shape of her back more clearly.
She was grotesquely shaped in a humped over form.

I smiled to let her know it was OK; I was there to help, to talk.

I sat down beside her and opened with a simple, 'Hello'

The little girl acted shocked, and stammered a 'hi '; after a long stare into my eyes.

I smiled and she shyly smiled back.

We talked until darkness fell and the park was completely empty.
I asked the girl why she was so sad.
The little girl looked at me with a sad face said, 'Because, I'm different...'
I immediately said, 'That you are!'; and smiled.
The little girl acted even sadder and said, 'know.'
'Little girl,' I said, 'you remind me of an angel, sweet and innocent.'
She looked at me and smiled, then slowly she got
to her feet and Said, 'Really?'

'Yes, you're like a little Guardian Angel sent to watch over all the people walking by.'

She nodded her head yes, and smiled.
With that she opened the back of her pink dress
and allowed her Wings to spread, then she said 'I am.'

'I'm your Guardian Angel,' with a twinkle in her eye.

I was speechless -- sure I was seeing things.

She said, 'For once you thought of someone other than yourself.

My job here is done'.

I got to my feet and said, 'Wait, why did no one stop to help an Angel?'
She looked at me, smiled, and said, 'You're the only one that could see me,' and then she was gone.

And with that, my life was changed dramatically.

So, when you think you're all you have, remember, your angel is Always watching over you.

Show this to everyone that means anything at all to you.

Like the story says, we all need someone...

And, every one of your friends is an Angel in their own way.

The value of a friend is measured in the heart.

I hope your Guardian Angel watches over you always.

This is a perfect story as I met my Guardian Angel Artemissia last year and I would like to dedicate this lovely story to her. Angels surround us.

Monday, August 16, 2010

Team A member Honey on the Road, doing what she can to help us.



You just have to Love her, Honey is very special, just like her parents Terry and Julia Dickson from Jimboomba. Terry a travelling Lion(LionsonOz)and Julia travel to shows in New South Wales, Queensland and Victoria selling Boots and Clobber from their T.J.'s stand while Honey raises what she can to help us. Terry, Julia and Honey have come into our lives, very real Angels, simply so understanding, amazing and caring, having these angels in our life is such a blessing. The world needs a lesson in love and these Angels make the best teachers.
Team A, Terry and Julia with Honey will be at:

Jondaryan Woolshed 20th-29th August,

Beaudesert Show 3rd-4th September,

Nanango Country Music Festival 10th-12th September,

Millmerran 28th September-2 October,

Kyogle Show 7th-10th October,

Beaudesert Showground 14th-17th October,

Warwick Gold Cup and Rodeo 28th-31st October.

Tuesday Nov 2nd to Sunday night Nov 7th Mud, Bulls and Music at Jimna.

Sat 13th to Monday Nov 22nd at a Beaudesert 4 WD track and then Monday to Pittsworth Country Music.

Friday Nov 26th to Dec 10th at Broadwater Haven Fishing holiday.

Guyra January 12th 2011

Drop in and see the Team Artemissia Angels.