July 2011 ... the promised update!

It has been a very long time since I last wrote and since Alice's last photos. So I am sitting down to write an update mainly with the intention of adding in lots of photos!

I have been meaning to write but there is always so much going on. In June I talked at a luncheon for 'Variety the Children's Charity'. Josh and Alice came with me to the lunch and both came up the front so I could introduce them to everyone. Alice was her happy, bubbly self and Josh showed everyone a fantastic picture he had drawn of Callington Mill, a local historical landmark. Everyone clapped for Josh and, his picture now hangs in the Variety office in Hobart. The premier of Tasmania, Mayor and about 60 others from Tasmania and interstate were at the luncheon - so it was very brave of Josh and Alice to stand up in front of them - I was SO proud!!!

I have included an exert from the talk I gave: "Disability is not something that anyone chooses. Disability is not determined by age, race, financial situation, political beliefs or any of the other markers we use to define our world, or our lives in it...

When I was pregnant with my first child, I knew from the very first who he was. And Josh is everything I imagined and more - gorgeous, funny, intelligent and creative.

When I was pregnant with my second child, at first I couldn't work out who she was, but by 6 months I new she was a girl and I new she was coming for a reason. She was coming to teach us something special. I hoped she would be an inspirational artist like Klimt, her father hoped she would be a famous sports woman.

Alice was born beautiful, healthy and strong. My world felt complete. Then at 8 weeks of age Alice had her first seizure. By 25 weeks of age she was having up to 30 seizures a day.

The Neurologist in Melbourne told us "It's like her brain's exploding, I don't know how she's survived this long" then he said "There's nothing we can do to save her - take her home to die".

Instead of telling the whole story (of a very long journey), I will just say that, in her own way, Alice let me know she didn't want me to give up on her, and I promised her I never would.

At about 2 years of age Alice was the 3rd girl in Australia to be diagnosed with a rare genetic condition called CDKL5. Cyclin-Dependent-Kinaise-Like-5 is an X-linked genetic disorder affecting more girls than boys, of no known cause - resulting in life threatening seizures, gastric dysfunction and severe intellectual and physical disability. Many of the children are peg fed (through a hole in their tummy), bed ridden, and regularly in and out of hospital. There are now 7 girls diagnosed with CDKL5 in Australia and about 200 children world wide.

Neither Mike or I are carriers of the condition, we have no family history of severe childhood illness or disability, I ate all the right foods, didn't drink or smoke and kept healthy when pregnant - Alice's illness and disability were totally unexpected, totally unprepared for and totally devastating for our family. I should also mention that we live on a farm outside of Oatlands (Southern Midlands of Tasmania), so Alice's illness and disability has meant the children and I have had to move to Hobart (Capital City) in order to ensure we can access medical care and therapy, while Mike stays at home to keep the farm running.

Life is a roller coaster for all families, but when you have a child who is seriously ill or disabled, the peaks and troughs of that ride are amplified ... Do you remember that feeling you get before the carriage starts its terrifying decent, when your heart stops and leaps into your mouth - that's the feeling I get every time I hear Alice stop breathing, at the start of a seizure.

But, we also have the highs, seeing Alice smiling down at me when I first wake in the morning, her eyes sparkling, and knowing we have another day together. Or when someones generosity makes Alice's life, our life, just a little bit easier.

That's why organisations like Variety are so very special, and so very important to so many people for so many reasons".

There was a little more to the talk but this is the bones of it. I love talking, I could talk under water and I am confident to talk both professionally and as Alice's mum, medically at genetics or biomedical conferences ... but opening my heart to talk about Alice's illness and how it has impacted on our family was really hard, I nearly cried a few times,but at least half the audience had a tear or two as well, so I think I got my message across!

Variety gifted Alice a specially designed body splint to help her learn to stand, and an Ipad to help develop her fine motor and language skills - so we are very grateful for the wonderful work they do.

I am off to another Biomedical conference in Sydney in August so hope to come back with more inspirational information and ideas .... and maybe another update!!!

Alice walking!

This video is a little old - now Alice is trying to walk holding on to only one hand. I notice the photos of Alice are a little outdated too (it's been a while) - so I think it's time I sat down and updated Alice's page! Coming soon ...

Following your instincts

This article was recently published in 'Pep Talk' published by

The Association for Children with Disability.

There are times when you have to hear the very worst of words from medical specialists; to absorb a prognosis you’d never imagine for your own child. When Nicole and Michael’s daughter Alice was 25 weeks of age, they couldn’t have been told more difficult news. Alice is going blind and is dying.

Suffering more than 30 life threatening seizures a day due to a rare genetic condition known as CDKL5, Alice had a very difficult start to her young life. She’s one of just five children in Australia to be diagnosed with CDLK5 which causes intellectual and physical disability, life threatening seizures and gastric dysfunction.

“But you know what,” explains Alice’s mother Nicole, “I have always believed Alice is meant to be here; she has always had a way of letting us know she wants to be here and, that she is here for a reason. She’s just celebrated her fourth birthday.”

As the family came to grips with the confusing and little-known diagnosis, there was never a moment they stopped believing in Alice and maintaining hope. Armed with this faith, Nicole has defied early medical expectations of Alice’s lifespan and development. She has turned to a range of specialists, including alternate therapies, to assist her daughter; and has even travelled to Italy in search of answers.

“Our therapy and treatment approach may not be right for every one,” explains Nicole, a practicing Speech Pathologist, “but for us and with so little known about this condition, it was important to investigate all options. Drug therapy was not assisting Alice’s seizures but making them worse, and as a parent who knew my daughter better than anyone, I knew it was time to seek other opinions and answers. It’s like looking for the pieces of a puzzle – we are slowly piecing it together and starting to see more of the whole picture.”

From ‘take her home to die - there’s nothing more we can do,’ at a time when Alice was so heavily medicated she was unresponsive to stimulus and only woke for seizures, Alice is now crawling and even learning to walk. She takes no anti-convulsant medication and now only has three to four seizures a week.

With a team of professionals ranging from a doctor who has studied Nutritional and Environmental Medicine, through a range of therapists and experts, and a strong focus on nutrition and supplementation, Alice’s seizures have gradually improved. While also under the care of a neurologist and paediatrician for advice and assistance, it was the family’s proactive approach to Alice’s care that shifted this baby’s life from one of constant seizures to one of a little girl developing and growing.

Brave and committed to Alice’s continued improvement, last year Nicole attended a genetics conference in Milan, Italy. Sitting with the world’s leading genetic engineers and scientists may have been daunting. But it didn’t stop this Tasmanian country Mum from standing up, microphone at the ready, and asking her questions (which were translated into five or six different languages) to the panel of medical experts sitting before her.

The conference focused on Rett Syndrome and for the first time CDKL5, both of which have been mistaken for one another due to their similarities. Both are genetic conditions, but where sufferers of Rett Syndrome seem to develop normally then present with the condition, CDKL5 usually presents not long after birth.

“I listened to statistics and developing theories, and increasing research is taking place into CDKL5 (especially here in Australia), but not much was offered in the way of answers or treatment,” says Nicole, “I wanted to know not just the statistics or features which define and help diagnose our children, but how we can ensure a better quality of life and a more positive outcome for our children.”

The determined Mum left her mark on the conference and was approached by many of the experts herself, still keeping in contact with scientists and specialists from around the world. She met with inspiring parents who shared their own stories and, who also wanted to know about Nicole’s experience with supplements and sound nutrition, and how this approach assisted Alice’s quality of life.

Nicole believes that through good nutrition and supplements, de-sensitisation and physical therapy, Alice has improved immensely. She believes that maximising health will minimise the affect of seizures and help to maximise potential. This approach may not stop every seizure, but gives Alice the health and strength to recover and minimise the impact these seizures have.

There is no doubt that some days are hard. A four year old who cannot walk, talk or even feed herself can complicate a family’s life when you are trying to tend to the chores of everyday life. It has certainly not been an easy path for Alice’s family including her five year old brother. But as always, the family remains strong.

Having just turned four, the future is looking bright for young Alice. She has spanned 211 days seizure free around the age of three, and although suffers from three to four seizures per week currently, is certainly a long way from her fragile early days of life.

“She can crawl now,” says Nicole, “she’s unstoppable around the house and is also learning to walk with her walking frame. She plays with toys, can feed herself finger food and is far more aware; she even picks up on the emotions and feelings of others; laughing at our jokes, or growling at me when I growl at her brother!”

There is no doubt that young Alice will blossom and share far more of her personality in years to come. This is only the beginning for Alice.

Alice Hansen

Words that inspire!

I wanted to share some words that are meaningful to me - words that friends have shared, words that inspire me.

This is a photo of Alice and I in the garden. The song "I saw what I saw" is on an album called "Tell me what you know" by Sarah Groves - it was given to me by a special friend who said she always thinks of Alice and I when she listens to this song.

(Thanks Shaelene xxx)

*** See YouTube link, left side of site, to hear music ***

This is a photo of Alice. The song "Beautiful Child" is on an album called "Station Wagon", also by Sara Groves - given to me by another wonderful friend, at a time when Alice was very sick and I needed it most. (Thanks Sharynn xxx)

*** See YouTube link, left side of site, to hear music ***

I collect Quotes.

Only ones that are relevant and have meaning to me.

My favourites are here to share.

"Success is never final. Failure is never fatal. It is courage that counts" (Sir Winston Churchill)

"You never know how strong you are until being strong is the only choice you have"

"Aspire not to have more but to be more" (Oscar Romero)

"Attitude is a small thing that can make a big difference"

A quick update

A photo of Alice standing tonight.

A photo of me lighting a candle in the Duomo, Florence, Italy - for Alice XXX

It has been a long time since I last wrote in Alice's blog. I thought I should give a quick update of where we are at. Since I last wrote, there have been many changes and there are still many more to come including: Alice's progress, diet and seizure activity.

I went to a BioMedical conference in Sydney and met some wonderful people who have become involved with the finer details of Alice's diet and supplement regime (See www.mindd.org for an amazing look into BioMedicine and its importance in the treatment of ASD and other genetic based disorders).

Then I went to a genetics conference in Milan, Italy - I went hoping to meet someone who could help me find answers for Alice .... I sat with some of our worlds leading scientific and medical minds in relation to genetics ... I stood up in front of them with a microphone, having my questions translated into half a dozen different languages, and I talked about my Alice, discussed my theories and asked questions (I was so nervous I didn't know whether to pass out or vomit!)... I met the German Geneticist who discovered the CDKL5 gene. I met other scientist who were genuinely interested in what I had to say, I have contacts from all over the world who will help, in any way they can; people who are inspired to make a difference. It was one of the most amazing experiences of my life. I also hugged mothers who were strong enough to go on after watching their child die in their arms, and mothers strong enough to fight against; a medical system that is failling our children, or governments who only offer token support for health issues that affect so many children around the world - I was inspired - these were people with passion like I have never known before - amazing people who give real meaning to 'life'.

So, now I want to say a quick Thank You, to some wonderful people with incredibly generous and giving hearts, who put a little sunshine in my life; Kelly who looks after my beautiful horse who I have only been able to ride twice in the last 3 years, Lisa who left her own babies to be my 'strength' in Italy ("How you doin"), Ffion who sings, those special people who drop gifts at my back door, mow my lawn or bring a meal to the door some nights when I feel like crying at the thought of cooking, the doctors and therapist who answer my text messages in the middle of the night and will be by my side even when I don't ask, the friends who understand when it takes me two weeks to get back to their phone message or understand why I have not called them, then there are all those special friends from around the world who know just what to say at just the right time - you are wonderful and I love you! X N

Alice's diet!

Currently Alice's diet is: Dairy free, gluten and soy free, free of artificial colours and flavours and... we have to be careful with just about everything else she eats. Red meat makes Alice vomit, peas turn her bowel motions to liquid acid and apricots send her seizures out of control (to list a few). Testing has highlighted dairy as a food Alice will probably never tolerate (it's like giving her arsenic) but, hopefully, as Alice's gut health improves she will be able to tolerate a wider range of foods.

Alice is able to eat: chicken, fish like ling and sword fish, rice, fresh fruit and vegetables (carefully chosen) and breads, muffins, biscuits etc which I make at home.
Alice's diet is rotated; even foods which she can tolerate are reacted to if she eats too much of them.

Alice's diet is low in salt (we use Celtic Sea Salt in some cooking).
Alice drinks LOTS of water - Natural Spring Water ... not tap water with Chlorine and other toxic chemicals in it.
Alice also drinks broth - usually made with chicken bones - she loves it and it is rich with nutrients!

We are considering the GAPS diet (Gut and Psychology Syndrome) as it has been successfully used as a gut healer. Enabling people with allergies/intolerance's to eat a wider range of foods.

I think it is also important to mention that I am a Speech Pathologist with a 'special interest' in swallowing and meal management AND I always consult with Alice's Dietitian and Doctor, and other nutrition specialists, when making any changes to Alice's diet and supplement regime; to ensure optimum health and nutrition.

Supplementation - What and Why?

Alice’s Supplements
* Flora Care for Kids – Probiotic for gut health
* Floradix with Iron – Multi vitamin
* 5HTP – Precursor of the Neurotransmitter Serotonin
* Calcium – Important for cell physiology
* DHA/EPA – Essential fatty acid: For brain and eye function and intellectual development
* Melrose Greens – Phytonutrients
* Cal Four – Calcium, Potassium and Magnesium
* L-Glutamine – Energy source for the cells of the intestinal tract and the immune system

* D 5000 – Vitamin D is important for cell growth, immune
system, nervous system and more
* Energetic Drops – Integrative Medicine
* Digestive Enzyme – To assist digestion

* CoQ10 - Antioxidant and nutritional support for heart function

These supplements may change - as we discover more about Alice's health and requirements; to provide maximum benefit and nutritional support.