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