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
