Evidence suggests that Sheila was last seen in the company of a Melbourne blogger, known as Sueblimely but that she is now on the road again.
Mug Shots of Sheila
Profile
Sheila is large, fushia pink, well padded and covered with embellishments marking her allegiance to the Sisterhood of the Travelling Bra.
She is considered supportive by all who meet her. Some have even called her Lovable.
Unless she is exposing herself for her cause on Flickr, she is an expert at covering herself up and is unlikely to show her presence in public.
She is most likely to be found among the sort of people, usually women, who like to hang around in bras.
The Sisterhood of the Travelling Bra is the creation of All for Women; a community site for “all kinds of every day Women to get together and chat, make friends, and get support and advice on all stages of life.Sheila has been travelling all around Australia”
The reports of Sheila’s whereabouts are quite right, she has been visiting me in Melbourne.
Sheila in Melbourne – Source Flickr – poetic licence by Photoshop
She was a little shy at first, tentatively peeping around the front door when she first entered.
Once she found aspects of the house that she could relate to she soon started to feel at home:
More mug shots – Feeling at home among the other cups
Family members were impressed by her warmth and soon got close to her:
I have had to return from my self imposed (need to get a website finished) blogging exile to let you know about Ivy and show how bloggers when they join together in one voice can have a powerful effect.
Today has been an emotional day for me. The relief of having found out that my son has been accepted into our first choice of adult day centre for next year was great. I was over the moon. He has a disability and I was so concerned about his future in an adult world, post school.
Tonight I read about Ivy, a poor little mite who has suffered so much in her first years of life. I have been following her story on Tiff’s (her mum’s) blog, Three Ring Circus, always hoping to read that she is improving, but her auto immune disease rarely seems to let go of its grip. Ivy was being denied a drug that could improve her life, reduce her pain and allow her to do things and go places like any other 2 year old.
A petition was organised by Veronica of Sleepless Nights and I was intending to write about this to gather your support. In fact, feeling outraged and sad, I had already jumped right in and started to write this when I read, with delight that Ivy is now being allowed to have the medicine she desperately needs. I was so pleased I went back and altered the “is” to was as I still wanted to share this with you.. The voices were heard! Isn’t it wonderful news?
Now I am returning to the depths of a WordPress theme but hope to find my way out again very soon, although I then need to delve further into the database – if I am missing for too long please send out a search party. I hear it can be scary in there and I may be hiding behind a table.
I occasionally divert from the topic of blogging and take advantage of the power of blogging to spread the word about important causes. This one is especially dear to my heart as my third child, a son, is fully affected by Fragile X Syndrome. I am a carrier and had a 50/50 chance of passing carrier status or the full mutation on to each of my children, although I did not know this before he was born. I have not been able to trace any other instances of it in my family although I know my mother was a carrier too and either her mother or father passed this on to her.
I have written a post over at the Aussie Bloggers blog which gives more specific details on the Syndrome and will add links for more information at the end of the post so I will talk here more in terms of my experiences.
When my third son was born, I knew there was a problem almost right from the start. Although I was told that I should not compare his progress to that of my other children, who tended to be early in their milestones, my little Fraggle was behind in everything. On top of this he was allergic to so many foods, threw up constantly, had recurring ear infections, had problems with a turn in his eye and had the strange but endearing habits of flapping his hands when excited. He did not seem to have a lot of physical strength but could get into positions that would make a contortionist proud. At age 18 he is still so flexible that he chooses to sit watching TV with is chin propped up by his foot! We seemed to spend half our life visiting doctors when he was young. I know now that all of his symptoms added up to Fragile X Syndrome. He has an intellectual disability, autistic and ADD (attention deficit disorder) symptoms and sensory defensiveness particularly to smell and sound. Recently anxiety has become a problem. He loves the footy but cannot attend matches because of the crowd noise.
He was not diagnosed until he was nearly 4 because at that stage even pediatricians had not heard of it. Since then it has become more widely known thanks to the efforts of those involved in Fragile X groups and organizations around the world but there is still a way to go.
You may ask why you need to know about Fragile X if you do not have a family member or a friend’s family affected by it.
For a start you may know someone who is affected but this person does not have an intellectual disability. Affected girls may be average learners at school with a weakness in maths. They may be shy, have difficulty with eye contact and suffer from anxiety. Up to 6% of children diagnosed with Autism have Fragile X Syndrome. If a child has developmental and learning problems with autistic symptoms but not enough to be diagnosed with Autism it could well be Fragile X. Although there is no cure for Fragile X, as yet, the therapies and medications used to treat it can be very effective in reducing many of the problems associated with it. Diagnosis is very important.
You or someone you know may be a carrier, with none of the symptoms that characterise someone with the full mutation of the gene. The Fragile X gene seems to work overtime to compensate in carriers whereas the protein it produces is absent or in short supply in those affected.
Female carriers can have problems with irregular, infrequent menstrual cycles and early menopause and they have a greater chance of having twins. They have a higher tendency to suffer from anxiety, depression and shyness. As a carrier I am familiar with all of these, as was my mother. One in 256 women are carriers! Being aware of the reasons for it all, being treated appropriately and making some lifestyle changes made a huge difference to me. I read last week about a study showing that Fragile X can result in sleep problems because of a lack of a Circadian Rhythm. I am not sure if this applies to carriers too but it has always been the case with me. Working from home allows me to not have to worry about not having a sleep pattern. It comes in very useful when building web pages for overseas clients and I can converse with them during their working hours
Older male carriers have a high incidence of a condition called FXTAS (Fragile X Associated Tremors). If they are unaware that they are carriers this is often misdiagnosed as Parkinson’s disease.
I have started a Fragile X group on YouTube to gather together Fragile X videos made by professionals and families of people with Fragile X Syndrome. Here is one of my favorites:
There are quite a number of parents of children with Fragile X blogging – you can find some of them via the Fragile X Webring and on the blogrolls of these sites.
I would not normally ask this but please consider informing as many people as you can either about this post (or a Fragile X Site) to help this awareness day is be successful.
Congratulations to Jon Pfeffer and his father Steve on the completion of their mammoth bike ride, starting in Brisbane 4th May and finishing today in Broome. The Journey from east to west Coast Australia was over 5,000km so this is no mean achievement! Training and planning the event began back in October 2006. Jon’s stepbrother-in-law, Nick, joined them for the first 1,000km of the journey.
Steve and Jon have been riding to raise awareness for BeyondBlue and and awareness and funds for Plan Australia, which respectively work to fight depression and child poverty. They have been blogging about their preparation and journey on their Brisbane to Broome Charity Bike Ride site.
Romance was in the outback air when Jon proposed to his girlfriend Emelie, when he met her at Mt Isa airport on 30th May. The sign on the ground says “Will you marry me?”. Many congratulations Emelie and Jon.
If you want to offer your congratulations you could do so via the Brisbane to Broome Facebook Group. Donations to show your appreciation of the effort and dedication of these intrepid travellers and to support the work of Plan can be made on the Brisbane to Broome Everyday Hero Page.
There is evidence that suggests unless the amount of carbon dioxide in the atmosphere is reduced to below 350 parts per million, major our earth will suffer from irreversible damage. The vision of the 350.org movement is to create a global clean energy economy that is also strong enough to relieve world poverty. To do this they are endeavoring to get millions of people supporting the cause united in a “common call to action”
Blogger’s have a voice can use it to spread the word. Brighter Planet recently put out a challenge. Their aim was to get 350 bloggers displaying the 350 badge on their sites and in return they offered to offset 350 pounds of carbon in the participants names! They have achieved their goal but are carrying on with their campaign.
They liken the offset of 350 pounds of carbon to flicking off 100 lightbulbs for a day or going two weeks without your car. So let us together try to turn off thousands of lightbulbs and display the 350 badge on our sites and add our voices to the growing noise 350.org is making.
To get more details and the code for the badge visit 350.brighterplanet. To find out more about the 350 movement and how you can help in other ways visit the 350.org site
