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


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

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.

Artemissia is responding to tickling with general limb and torso movement increasing, slowly but surely.

Piano lessons are still on the daily routine. Move over Beethoven, Artemissia is here.

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.

The sleeping princess is just beautiful.

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

Monday, October 18, 2010

Big hand, little hand, just amazing to hold

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.

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

Mum giving me a workout

Monday, September 27, 2010

Team A Patience and persistance promises to bring Artemissia back

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.

Saturday, April 17, 2010

Book 2 Artemissia~ A Spiritual Awakening

Automated writing through Carl Sagan,
Well, hello Kelly. Good to be talking to you. So tell me what you were interested in discussing today?
Ah music, it even soothes the savage beast. I am joking here, you do know that. But in actual fact it has much truth in that saying. For music is the essence of our being and each being comes to earth with their own tune, so to speak. That tune is your life story and it is portrayed in your speech, actions and feelings. So in saying that, what is your tune that you are whistling?
I guess what I'm saying is choose your tune wisely, you may change it any time you like. But make it a good one I say. Why not make it a epic song. That makes your heart soar and brings tears to your eyes and makes you truly feel alive. Now thats a good song to sing!

I choose "Arms wide open" by the band Creed
This song to me is about complete surrender and in surrendering God Says "Welcome to this place. Under the sunlight. I'll show you everything, with arms wide open, now everything has changed. I"ll show you love! I'll show you everything!"
To me I choose this song to sing, because it is about faith. Faith in the unkown, and in trusting in that with faith their is a knowing that everything will be okay.
kel xoxoxo love and light

Sunday, April 11, 2010

From Book 1~ Artemissia~ A Spiritual Awakening

From book 1 ~ Artemissia~ A Spiritual Awakening
Dear God,
I do bubs physio and see she is completly present. I be strong but sometimes I feel like crying. I yearn for that interaction and to be able to hear what she is thinking or trying to say to me telepathically. Because she is so close to me emotionally I seem to not be able to hear her thoughts. I dont know whether I block it consciously or subconsciously. Sometimes it hurts. Its too close to the heart. I know if I go to a higher level meditation state I could hear her like I have before. To know that she is completly present in my heart and in my mind is good for me to understand. Yet i'd lie if I didnt say that I still long and yearn for that missing interaction between her and I. A smile, a facial gesture, to speak, to move her body. I wish she could do all of these things. Dont think Im not grateful and dont count my blessings every day that she is here. Dont worry I am eternally thankful for that. I know she is a miracle and that we continue to see even more miracles. I just miss her cheeky little personality.
I practise detachment and compassion. Compassion is definatley easier then the art of detachment, thats for sure.
I know the reality that we live in. I know that we are spiritual beings in a human existance. I know that I picked this at one point in my life to evolve and become 'awakened'. I know all this to be true. But it does still pain me even though I am optimistic and strong.
I guess thats the reality of being a human. We have senses and emotions and I must honour them. If I were not to feel the things that I feel how would I have 'woken up' and become aware of the world we live in.
I understand that we already live on 'heaven on earth" and somehow we do choose our own lessons to remember. But it sometimes doesnt make it easier to see our daughter, someone whom I feel so much love for in the state she is in.
She is so peaceful and surrounded by love and she continues to teach us day by day with patience and understanding of our illusionary suffering. She has brought out the best in us and she always will, for this is the reason that she selected to be here. I understand that when you have a child you do really learn about unconditional love in its finest form and when your child is unable to show you and return her love in a physical way, a hug, a smile, a word you learn the lesson even deeper. That is there are no conditions. Just love, its that simple.
I long to show you all the beauty in the world. But I guess she is the embodiment of beauty and all that she radiates.
I love you Artemissia for all that you already are and continue to be. That is love, strength, courage, patience, perserverance. These are just some of the things you are to me.
Thankyou Artemissia for helping me be the best I can be for today and all of my tommorrows.

We are radiant light
spinning and twirling,
in lifes orchestrative symphony.
Waves of love and light.
Together as one.
You and I my dear one.

from mum xoxoxox

Sunday, April 4, 2010

Hug with Amma ~ 1st of April 2010 BNE

We had a hug each with AMMA at Brisbane.
It was beautiful and wonderful and we felt her love, and compassion.
She is a beautiful lady and we are blessed for the trouble that they went to
so that we could get bub in and out easily, hassle free.
Thankyou Amma and all her team for their kindness and love.

Happy Easter to ALL !

This is a big Happy Easter call out to all those wonderful people that have helped and that continue to help our family with their friendships, time, love and support.
It is appreciated more then words can say and we are eternally grateful for your ongoing love. Know that we send all our love to you all in return.
love and light xoxoxo
Kel, Alex, Artemissia and Colleen

Extract from my book Artemissia ~ A Spiritual Awakening, A day in our life

Exract from CHAPTER 12~ Ground Hog Day

One day in Artemissia’s life included a strict regimented routine starting at 6am.
I would come on duty and make her 6am,7am,8am drugs and water flushes.Then suction and rotate her every 1and 1/2hours. Nappy changes and monitoring. Then mum would start at 10am then pop bub in the shower in her seahorse chair at 1030am. Then onto the bed to get her dressed, dry her hair, into her pram, get her support boots and gloves on, make her drugs up for ½ the day that are given to her every hour with water flushes down her tube. Get outside in the sun amongst the frangipanis 15mins then back inside.

Out of the pram after 2hours, make her bed, do the milk to go in her nasal tube, Fish Oil drops in her milk, into her monkey for ½ hour, put her back on the bed, boots and gloves off. Suction when she requires it. She can have coughing fits, gags, vomits so you must always have her near you and the suction machine. Physio time and that includes massage and repetitive exercises for an hour, (twice a day) for all her body, arms , legs, fingers are all moved to keep active and helps with blood circulation because if you don’t move it you lose it. Then chest pats whenever needed but at least once a day. On with the nebulizer for breaking down the flem on her chest. Read her a book, then the day shift hand over from mum to me at 1pm. Prepare all her 1pm, 2pm drugs and 2pm, 3pm and 4pm water flushes. Physio and massage again then back in her pram , boots and gloves on for 2hours, suction and nappy change throughout whole day. Back onto bed rotate every 1 ½ hours so no bed sores occur. Monitor and record every thing you see throughout whole day and night. As in how many poos, wees, physio box ticked to show everything has been done. Cross the T’s and dot the i’s in every box on the excel spread sheet so the hand over’s could be able to be understood what has been done and completed so as not to double up on anything.
She was feed over 24hours continuously with 6 hours off spread out over the day. The drugs started at 6am and the last one for a day cycle would be given at 10pm at night, everyday, all day, 7days a week, month, after month, after month.

God's Poem ~ Extract from my book , Artemissia~ A Spiritual Awakening

~Gods poem through me automated writing.~

Choose love, not fear.
Braveness not weakness.
Courage and strength.
Not darkness or disillusion.

Lift your gaze to the light from the heavens,
and know that you are a part of it,
as it is a part of you.

Radiate with golden abundance,
as that is your true spiritual nature and destiny.

Thank you God

Monday, March 29, 2010

update from mum

We continue on our journey of being parents, caregivers, supporters
to our beautiful daughter and grand daughter to my mum , Artemissia.
She is everything I could want in a daughter.She is strength, beauty, patience, perserverance and love.
Eventually we will get her nasal tube out and get a button put in so she can be
more comfortable and for her feed and drugs to be administered.
She is making more noises vocally, little grunts and grizzles and little cries. She talks more with her eyes when she looks at you in pure frustration of what she is experiencing or feeling. All we can do is try to decipher her needs in her body language that she is able to express and even that is limited.
We love her for all that she is and all that she continues to teach us.
That is that love comes in many shades and degrees of color not just black and white.
Soon we hope to go and see "Amma" a being of love that travels and embraces the world. We look forward to meeting her and for her to meet Artemissia.

Sunday, March 21, 2010

update~ The Book

We have had a article in Take 5 this week. Dated March 24 2010 Issue No 12.
Pages 10 and 11. There are some really good pics too.

I have also completed a book I have written called Artemissia~ A Spiritual Awakening.
It is the story of our physical, emotional and psychological journey that transforms into a spiritual understanding and enlightenment.
Also the story of how through our own experiences we are all capable of reaching exactly the same heights of love in times of sadness or despair.
I hope this book will lift up peoples view points or perspectives of the reality that we live in, or beleive that we live in.
I hope that it will make you cry tears of happiness and also tears of inspiration and joy.
I think that we have alot of reasons to feel optimistic in life and I choose to share
these feelings of the heart with you the reader.

I am in the midst of finding an agent for my writings. I know the right one will come.

We continue on our journey surrounded by love of our daughter's beautiful spirit.
love and light xoxox Kelly

Sunday, January 24, 2010

prayers are powerful

I pray for Artemissia to see again completely with eyes of compassion, love
and clarity. May she look upon the world with eyes of divine love.
May she speak her truth and speak eventually with words of forgiveness , joy
and unconditional love,
May she have strength to continue her long journey.

I pray for theese things daily. I send it to the universe and surrender to the outcome.
I trust what will be will be.

Well Artemissia has had a eye test last Friday and the results are amazingly positive. Her brain responded to the light that was being flashed in her eyes to test her vision.

She is also using her voice box and trying to communicate making different noises. She is loud and strong and just beautiful really.

God bless out little angel. Thankyou for this beautiful gift. Our daughter, Artemissia.

Wednesday, January 13, 2010

message from mum

HOPE: It is an important word. It is a word filled with optimisim, confidence, inspiration, new beginnings, opportunity's, something to strive towards.
HOPE: is an important word in Artemissia's transistion from healing to becoming whole again. Hope is what we hold onto in our darkest and brightest moments.

Tuesday, January 12, 2010

Pyrimethamine Phase 1 trials overseas


Tay-Sachs disease and Sandhoff diseases are caused by deficiency of an enzyme called β-hexosaminidase A, or Hex A in short. This enzyme is located in a particular cellular component, called lysosomes, inside the brain cells. The reason that Hex A of patients with Adult Tay-Sachs disease or Sandhoff disease is deficient is because this enzyme had gone through mutation, resulting in it not working very well. In healthy people, Hex A efficiently breaks down GM2-ganglioside, which is a by-product from cells of our body. However, patients with Adult Tay-Sachs disease or Sandhoff disease cannot efficiently break down GM2-ganglioside in the body. Therefore, these patients have high levels of this by-product in the brain cells, which causes the brain to be unable to function normally.

There is a drug called Pyrimethamine. This drug is used by doctors to treat specific types of infections called malaria and toxoplasmosis. Our 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.

Although results from laboratory test tube studies are promising and Pyrimethamine should theoretically restore brain function of these patients, we do not know if Pyrimethamine is safe or if it would actually work in patients. The current studies overseas are the first study (a Phase I study) of testing Pyrimethamine to treat Adult Tay-Sachs and Sandhoff diseases. The studies stared in september 2009 and are being conducted at Toronto, Clevelland and New York. Universities. The objective of this first study is to see if Pyrimethamine is safe in these patients and to see if it can restore the brain function of these patients.

We are always mindful of all Artemissia's medication regime and must look at so many areas in her care, in this case it is drug interactions, conflicts and side effects.
One of the anti-convulsants can work against the Pyrimethamine and increase floppiness, another anti-convulsant brings on secretions,or, because the Pyrimethamine is an Inhibitor, in that more of it will not make it work better, it will in fact work less. We learn from Artemissia with close monitoring and care. We learn from the works of Professor Mahuran and his colleagues. It really is an amazing world that we live in.

One of Artemissia's two mutations has in lab tests proved to work and increase Hex A activity. Having the enzyme levels tested accurately should confirm that the improvements we are seeing are the results of Hex A levels rising slowly and possibly this is allowing her central nervous system to repair itself, not degenerate further. Joining with physio, massage and stimultory exercises every day we also hope to be able to increase development thus further restore brain and body functionality. What a journey.

Enzyme tests a first in Australia

Good news as we will soon be able to have accurate readings of Artemissia's Hex A enzyme activity. Dr. Michael Fietz confirmed that Adelaide Women's and Children's Hospital Genetic Laboratory have consented to conduct the testing as it is the major indication of any treatment's success. Professors spearheading Pyrimethamine research from Toronto University and The Hospital for Sick Kids in Toronto have offered to supply the John Hopwood Laboratory with enzymes to enable them to test accurately. To date, the testing conducted in here has not been accurate as other elements such as Hex S enzyme have been hydrolysed in the process, simply put, the final reading is inaccurate. It was used as a ballpark figure for diagnosis.
Blood sample freshness and huge travel costs make getting samples to Canada impossible. Having a proper reading will help us see what her levels actually are and understand how to better manage her treatment, in essence it could be the difference between life and other...

Thankfully Professor Hopwood heading Adelaide and Professor Mahuran heading Toronto have worked together in the past and are good friends.
Thanks to these gentlemen and their teams we have a chance.
Their life missions are simply dedicated to their work finding cures for these, up until now, relentless diseases. Professor Mahuran was on DR. Sandhoff's team when the disease was first found in 1968. Amazing.
It is very emotional for us to have these wonderful people helping us.
Thank You.

Good news, some sleep at last

Finally after a year we have a respite nurse provided for 3 nights per week, from 10pm till 6am. We can now sleep in peace (in the next room) while nurse Lyn observes and cares for Artemissia. Lyn is a wonderful person, and, like all of us has fallen in love with Artemissia, establishing another bond that lets baby from within her shell feel calm, safe and nurtured so she can heal. Thank You so much DADHC Support Team

Keeping Artemissia's airways clear

The Nasogastric tube is for all her food, water and medications. That is how everything is given.
Artemissia cannot swallow properly due to the disease and can aspirate secretions back into her lungs causing infection, this is what has always ended the battle for victims of these diseases.
We constantly have to suction mouth and nose to clear the build up of secretions from her lungs. Regular chest patting dislodges mucus from her lung walls so we can then clear it with suctioning and her "new" stronger cough.
It hurts my heart so much to have to suction so much, watching our baby fighting the constant flow of secretions, she is next to me now and at last breathing easily.
Suctioning can last for 3-4 hours at a time, and averages 7-8 hours intermittently through the day. There is no rhyme or reason. It is what we need to do to keep her alive as she slowly heals. One of her daily anti-seizure medications actually helps increase the secretions, but without it, seizures and convulsions. The other anti-seizure medication increases her floppiness but without that one she has clusters of seizures. We have managed to reduce that one by 2ml per day through our monitoring and recording. Things are improving slowly but surely.

Technically speaking; in these disorders abnormalities in oral-motor function and coordination result in swallowing difficulties, resulting in choking and aspiration, frequently exacerbated as a result of poor cognitive function.
Inadequate control of respiratory muscles due to enervation or hypotonia can impair the normal cough reflex and, as a result, interfere with the ability to clear aspirated material and pulmonary secretions from the airways.
Seizures carry a high risk for aspiration of saliva and gastric contents. Because saliva and gastric contents contain bacteria, aspiration introduces microorganisms into normally sterile airways. Ineffective secretion clearance associated with recurrent aspiration, places patients with pulmonary complications of leukodystrophy at high risk for hosting a vicious cycle of mucus obstruction, infection, and progressive, irreversible lung damage.
Retained secretions provide a cultural medium for bacterial pathogens. Consequent infections produce still more mucus, initiating a vicious cycle of mucus obstruction, recurrent bouts with pneumonia, bacterial colonization, progressive pulmonary compromise and, finally, respiratory failure.

This all may seem cold but we have to understand as much as possible about Artemissia's condition in order to be able to help her properly

We cannot let this happen to our baby, she is trying so hard to be with us, I am just a dad, but will do everything there is possible to help her in this fight.
There is Hope, Artemissia has already proved this. I will never give up!

Friday, January 8, 2010

Lots of Love and Cuddles

Terry and Julia often drive all the way from Jimboomba for the cuddles.
Their support and help has been a blessing.
It really is amazing how many wonderful people are out there and Artemissia inspires many.

Xmas Day 2009

Artemissia looking good in her christmas dress.

Lots of mates visited and prezzies topped her day.

Thank you everyone.

New Years Day 2010

Trying very hard to show us her moves.

One very determined little lady.

Mum and aunty Michelle putting Artemissia

through the daily workout.

The A-Team in action.

The inevitable suction to clear her airways.

Wednesday, January 6, 2010

message from mum

Sharing a moment of cuddles with Artemissia is the nicest feeling ever.
She seems to be looking at me and she knows that I surround her , holding her wrapped up safely in my arms of motherly love.