My story

I really hate having to use one of these, especially like today when the ruddy thing decided to leak, this meant I had to go home from work early as it smelt and was wet and icky!

I have a spare change of clothes at work for if the tube disconnects from the catheter but this time it was in the bag itself and it was leaking from the material so off I went after explaining to my employment consultant why I had to go, this does not look good since I was off practically the whole week last week with croup and asthma!.....

Oh if only I did not have to use one!!!....

Sad day

Today has been a sad day for New Zealand and the friends and family of the sweet little girl above.
Her name is Aisling Symes and she went missing last week and was feared to have been abducted, the 2 year old went missing while she was with her parents who were preparing her deceased grandparents house for sale, in Waitakari in Auckland.
Her body was found Monday around 8pm GMT time in a storm water drain by the local Police, they have ruled out foul play and have said it was from drowning through misadventure.....

The whole of New Zealand has rallied around the famly and has helped with the search and other things.
Please keep this family in your prayers as they mourn for the loss of Angel Aisling..

Rather annoyed at myself

Well on Friday I lost my mobile, this is very annoying and inconvenient as I need it for work and to keep in contact with mum. Luckily my contract SIM was at home and it had a pre-payed one in it and I had pin coded it!, I have given a report to the Police and have rung the Foundation for the blind who were the ones who purchased the phone for me and installed the 'TALKS' software on it.....

I believe I dropped it in the taxi that brought me home Friday night, the driver who brought me home yesterday night told me after I mentioned he was an Indian driver, said that she has known Indian drivers to keep the phones they find.

Vodafone are NOT as helpful, when I asked them to blacklist the phone they said I needed a Police report, when I said the copper helping me was taking the paper work in to them tis afternoon said that I had to go in myself even when I said that I was blind and used a wheelchair!....Some people!.

Today I went to a first aid refresher course and passed just like my caregiver said I would. We did these scenarios where we each got to be a patient and we also got to be the first aider, when I was the patient I had to act like someone who has had a stroke, this I believed was easy as even though I have not had one yet, I could do one day, my advantage was the weak side of my face and the fact I did drama at school and knew how to act. I even did the funny talking and all.

What was good was the guy who was the first aider first assumed I had had a seizure, the reason why this was good was because it showed that he knew that not all seizures involved jerky movements, it was a neat day all up and we even gt stickers to place on our cars to show people we were certified first aiders!.

Anyone needing a first aider, you know who to call, sorry only certified for New Zealand (as it's to far to fly tehe).....................

New place

Today I moved into my new room, it's nice and warm and I am startting to sort things out slowly.

I did some personal shopping so I have a few things here and I have my computer, tomorrow I have no class as we get a weeks holiday!.

Anyway I am off as I don't have much else to say.

My syndrome

Ok I have noticed that I have nothing up on my syndrome and some may not know what it is or what it entails so here goes.
P: Posterior Fossa
H: Hemangioma
A: Arterial venous malformations
C: Cardiac anomalies
E: Eye anomalies
S: Sternal cleft (Partial or total absence of sternum, not all children have this)

The name is an acronym and was coined by Dr. Ilona Freidan in 1996, it is mostly common in females although I do know a couple of little boys with it, life expectancy varies and can be fatel (we have lost a couple of little ones to it already).
Some of us suffer from seizures and strokes.

I am lucky I have not as of yet had a stroke but many of my little friends have and like me (I have absences) one or two have seizures. For alot of the parents I am the only adult they have met with this syndrome although we have heard there is a adult in the Netherlands, I am also the only adult we know of to present with all the symptoms.
Not much is known about PHACE(S) even though this is more common then Sturge Webber Syndrome, when originally diagnosed some parents are told their child's Hemangioma is a Port Wine stain or PWS and so they automatically go and research them, learning of Sturge Webber syndrome or SWS can be quite frightening and it's not until they see a Dermatologist or a specialist who has seen it before that they find out the real diagnoses,

When I was diagnosed in 2000 I went searching for information, finding none I started the very first PHACE Syndrome support group, the group has now become archived on another started by a mother whose son has it and also has Autism which we suspect is a cause of the syndrome (name is not mentioned for his and his families privacy), this little boy is a trooper and has been through so much and I got the honour of meeting him at the conference last year.