Nicole, Josh and Alice Interview

Well I haven't written in a while - so much to do, so little time (isn't that what they say?).


Alice is now 7 years old and it's time I updated some photos and reviewed her progress.

Alice is in grade 1 at main stream school - She LOVES school and has lots of friends ... Alice is so bubbly and happy, maybe a little too loud at times ... but to see her walk up to her friends for a cuddle when she arrives in the morning brings tears to my eyes! YES ALICE IS WALKING!!!

Alice hadn't had any seizures since October 2012, but after a bad week in January 2013, she is now having 2-3 seizures a night. We are now using a medication called Zonegran (Zonisamide) which appears to decrease the intensity and length of the seizures .... but she still stops breathing, and my heart stops for a second every time I hear a seizure start. BUT Alice is truly amazing, she has a seizure then sits up for a hug, and smiles at me ... what spirit and character she has - I am so proud of my girl (but you already know that don't you!!!!)

Alice's diet is still a huge part of my everyday ... everything is carefully cooked, with a balance of fruits, vegetables, meats and carbs ... the wrong balance can cause disaster with her vomiting and in awful pain and of course her seizures get worse. Giving her the wrong food is even worse, and as her

Paediatrician says, is life threatening - so strict supervision is required - now that Alice is walking, and VERY independent, she has to be watched even more carefully than ever.

Alice was walking fairly well, then regressed for a while in January, I think she probably fell and got scared? SO we have worked really hard on getting her back on her feet AND she pushes our hands away and takes off to wherever she wants ... usually off to see her brother or her friends.


Some photos ... See how beautiful she is.... mmmm I put about 15 photos on this blog BUT they all disappeared when I posted it - So I will post more
                                         another day ... Have a look at Joshua's photos via You Tube!!!

I have also included (Via You Tube):

- A video of Alice walking with her brother (of course)

- A preview of a special movie Alice's brother, Josh, made about her progress ... this is truly inspirational 

   and will bring  tears to your eyes ... I am so proud of my clever boy

- An interview Alice, Josh and I did for a Disability Awareness Day

- And a slide show of great photos that Josh made up 

My quote for today:

"Our lives begin to end the day we become silent about things that matter." 

Martin Luther King, Jr.

... Enjoy ... share with friends ... and I hope to write again soon. X Nicole

Research, Inspiration, Love, Trials and More!!!

I recently returned from the Mindd conference in Sydney (www.mindd.org) The Mindd Foundations mission statement is 'Mindd Foundation is committed to improving the lives of Australians by promoting Integrative Healthcare that treats the source of illness in each individual with the aim of helping them to reach their full potential and enjoy a life of health and happiness'. Mindd is an acronym for Metabolic, Immunologic, Neurologic, Digestive and Developmental. Mindd focuses on the idea of 'Healthy Bodies Building Strong Brains' as it is believed that; Allergies, asthma, ADHD, anxiety, autism, learning delay, depression, obesity, diabetes, digestive and mood disorders often share underlying and overlapping issues of nutritional deficiencies, toxicity, infections and/or a dysfunctional digestive system. SO - Yes the conference was very intense, with a huge amount of information to absorb and some inspirational speakers who reinvigorated me in my quest to ensure Alice has the best possible chance to be healthy and to have the quality of life she deserves.

My one conundrum is that no matter how much time I spend researching and investigating and trialing and loving; I do not have enough knowledge of health and nutrition to ensure I get exactly the balance required to optimise Alice's health. I know I am on the right track, and I have been fortunate enough to meet so many people along the way who help us on our journey ... but no one seems to have all the pieces of this puzzle ... So a dedicated team of knowledgeable professionals who live and breath this particular area of care is what I have been searching for (never to be an exclusive group but a solid core!). I am not naive enough to expect a cure for CDKL5, or a complete reversal of the early damage done by intellectually limited doctors blinded by their own arrogance (does that sound bitter???), But improving Alice's quality of life and maybe finding a management for the condition (... like Lorenzo's Oil - an inspirational family and a simple management for a devastating genetic condition) is surely not too much to ask.

The Philosopher Voltaire wrote 'Doctors prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of which they know nothing' - unfortunately this is so often true, and we, as a well trained, educated and modern society let them! One of my biggest battles (in the distant past) was with Pharmaceutical companies who feel the need to put artificial colours and flavours in our 'already toxic' medications. One Anticonvulsant medication Dilantin (liquid form) contains the colours Sunset Yellow and Quinoline Yellow - both banned in the USA, and in Australia we have been lobbying to have them banned in our food. These colours have been reported to cause seizures in a small number of cases (and they are in Anticonvulsant meds!) BUT when I discussed this with the Pharmaceutical companies they said the colours and flavours were in the meds to make them more appealing to the consumer - but they had no detrimental effect on the action of the med. THEN ... but they were unable to take the colours and flavours out as they would have to carry out extensive and expensive research before re-releasing them (why ... if they are just there to make the meds look and taste pretty????) Well .... you can see why I started looking for other options as a preferable approach to health care! (Note: Don't forget there are Compounding Pharmacies who can make up almost any medication you require but to your unique specifications ... eg. without the colours and flavours!)

Back to the conference ... It was an inspiring weekend - listening to medical professionals who were not only amazingly knowledgeable but passionate about their area of expertise and about the difference they could make to the lives of our children.

One particular speaker (I went specifically to listen to) is Dr Nancy O'Hara from the USA who is a Paediatrician dedicated to the integrative and holistic care of children with neurodevelopmental disorders and ASD. There was also an animated speaker David Quig (USA) who's particular area of interest is the effect of heavy metal and chemical toxicity on nutrition and metabolism. Julie Matthews is a nutrition specialist, also from USA, who writes books including "Cooking to Heal" and is more passionate about food than any person I know! There were also a number of other doctors, health care professionals and specialists from around the globe who ensured I wrote pages of notes and didn't nod off once during the entire 2 intense days!

On the Sunday I met with Dr Nancy O'Hara who, luckily, remembered my name as I had contacted her by email previously. She agreed to a consult with me on the Monday ... SO after an intense Sunday night (filling in a 24 page questionnaire and ensuring I went to the meeting armed with a list of reasonably intelligent questions ... I didn't want to let Alice's side down!) I spent an intense 2 hours with Nancy and her team (including a specialist based in Sydney) AND they agreed to take Alice on as a patient ...YIPPEE!!!! One step at a time ... I realise our journey is going to be life long, but each step gets us closer and I feel this step is another 'Giant step for Mankind' ... at least in relation to us.

I do love my quotes ... as you may well know ... so here are a few more I collected at the conference.

"Let food be thy medicine and medicine be thy food" Hippocrates

"We must be the change we wish to see in the world" Gandhi

"Do not go where the path may lead. Go instead where there is no path and leave a trail" Emerson

P.S I think there should be a prize given to the person who can count up how many times I used the word 'intense' in this blog!!!! X

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"