Sausage Sizzle Success

Friends and locals buying a sausage.

Cooking the snags.

Yesterday's sausage sizzle out the front of Addicted 2 Hair on Ashburton Drive was a great success. Even with the weather looking ominous,the turnout from our local and greater community was fantastic. There were people who came down especially to meet  Jayda,who were touched by our story. The people made us feel in turn, touched by their generosity. Some who didn't want a sausage made a donation or bought a reminderband to contribute to the fund raise. In the end a total of $1700 was raised. We would like to say a big thank you to Addicted 2 Hair Renee and Natalie,their husbands who cooked and served the sausages, Renee's mum and dad from Hey You Pet Resort and all other contributors whether it was for the rolls,sausages and drink donations,or the many people who gave up their time and opened their wallets for what we know is a great cause.

Us getting involved.

Jayda very tired and over whelmed by the day.

Texas Update

The Texas Children's Hospital have sent us appointment times and cost estimates for Jayda's evaluation there.

We are booked in to see Dr Clark the Neurologist at TCH on the 4th of February 2010. Our plans are to depart Perth 27th of January and return on the 10th of February. This may change depending on the outcomes of neurology appointment.

Our estimated costs are as follows:

AIRFARES:$9,000
ACCOMMODATION:$1,500 U.S.
MRI:$3,500 U.S.
NEUROLOGY:$120.00 U.S.
PHYSICIAN:$346.00 U.S.

We have raised nearly $4,000 so far and with the sausage sizzle,silent auction and everything else going on,our target is looking not too far away. So a BIG THANK YOU to everyone who has supported us,it's hard to thank everyone individually in person but we do appreciate it.

We'll keep you updated on the fundraising tally and any other booked dates.

Raffle

For those coming to the sausage sizzle we are going to be selling raffle tickets.The tickets are $10ea with the proceeds being divided between us and the WAFL.Bob Uittenbroek of the GOSNELLS FOOTBALL CLUB has kindly offered to do this for us.There are some fantastic prizes and they are;

1ST PRIZE-A TITAN FORD TERRITORY 2009 TX 5 SEAT AUTO RWD valued @ $44,000
including 6mths licence,rego and stamp duty.

2ND PRIZE-Corporate Suite,Subiaco Oval  valued @ $9200
Fantastic suite for 16 people including food,drinks and parking for an AFL game at Subiaco Oval.

3RD PRIZE-AFL Footy Fanatics Melbourne Weekender valued @ $3000
Return Airfares,2 nights accommodation,2 reserved seats to an AFL game of your choice.

4TH PRIZE-LG 42"PLASMA PQ2O SERIES TV valued @ $1,699

BOOK BUYER'S PRIZE valued @ $3,900
A trip for two to Broome staying for 5 nights at Cable Club Resort.

We are not the only people selling these tickets,only tickets sold through us will be supporting Jayda.The raffle ends 20/05/10 and will be drawn on the 15/06/10 Winners will be notified and results published in The West Australian on the 18/06/10.GOOD LUCK!

PHACE Syndrome Registry

We finally received Jayda's registration papers from Texas Children's Hospital today.This means that Jayda will now become one of 250 patients worldwide to be included in the research being conducted by the Texas Children's Hospital/Baylor College of Medicine.This research registry is designed to help clinicians and basic scientists understand the cause of PHACE Syndrome,which may help lead to treatment and prevention.The registry also serves as an educational resource for families who are interested in learning more about this syndrome.

Local celebrity

Jayda has made the front page of our local newspaper Gosnells Examiner. The paper mentioned the upcoming sausage sizzle hosted by the girls at Addicted 2 Hair. It also covered our plans to get to the United States and Jayda's journey through all of this so far. We would to say a big thank you to Julian Wright for taking his time to put our story out there amongst the community. We hope that this will help to raise some awareness and also help towards our fundraising efforts.

Look how far I've come!

Since Jayda turns 6 months in two days I thought I'd show just how much change there has been in Jayda's hemangioma and her own growth too. Jayda had weighed 3.3kgs when born and had what appeared to be a small bruise on her cheek. Jayda is now just under 8kgs and her hemangioma had been through its own growth phase too. The hemangioma started to grow rapidly during the first few weeks that she was home from the hospital. It was no longer isolated on her left cheek,it had spread from her forehead down to her top lip,and also on her right forehead and eyelid. It had gone from a light pink to a fiery blistery red appearance.

At 2 months of age Jayda started her dose of oral steroids. This not only effected the growth of the hemangioma it also made Jayda grow ( Buddha baby) one of the many side effects of the steroids. As Jayda grew and the hemangioma faded,we had her heart assessed and were given the all clear to start her on Propranolol,she was 3 months old. This has less side effects and meant she could be slowly weaned off the steroids.

By 4 months of age Jayda was weaned off the steroids and her hard solid cheeks were softening. The propranolol was keeping the hemangioma from growing and it had started to appear a light pink again. Jayda was still growing at a good rate,but she will always be a lot bigger than what he older sister was like.

At 5 months of age Jayda is still on the propranolol and will continue to do so until the hemangioma starts its involution phase. The light pink appearance of the hemangioma isn't the only noticeable aspect of it,she has lots of spider like veins through it. These may not disappear with the use of the propranolol but we have been told laser treatment would most likely be needed later on. But for now our main focus is dealing with her PHACE Syndrome and the anomalies associated.

Sausage Sizzle

Just a reminder to everyone that the sausage sizzle is coming up.The girls at ADDICTED 2 HAIR have organised this.Cheers girls.So come on down meet the family,have a snag and get yourself a reminderband.

VENUE:Ashburton Shopping Village,Ashburton Drive,GOSNELLS
DATE:24th October 2009
TIME:11:00am-2:00pm

DONATIONS

FOODWORKS GOSNELLS:150 Sausages
BAKERS DELIGHT THORNLIE:50 Buns
BRUMBYS GOSNELLS:50 Buns
SUPA IGA GOSNELLS:50 Buns & 50 sausages
TIP TOP BAKERIES:9 Dozen buns
ILONKA FOODS:120 Sausages
HEY YOU PET RESORT:Soft Drinks