Accommodation booked

Our hotel is now booked for our 3 week stay in Houston,Texas.We are staying at the Marriot Residence Inn,Reliant Park.It is fully self contained so we are able to cook our own meals etc.It is only a short distance from the hospital and it has a shuttle service to the hospital.So now with our flights and accommodation booked and our appointments made we are ready to go.

Auction Success

On Sunday we held our silent auction at the GONELLS FOOTBALL CLUB.We had spent hours the night before gift wrapping the items and getting everything in order. Matt started his first trip of dropping things off at 9:00am.The day started very slow and for a time we were getting quite worried.By 3:30pm we started to get some people in and some activity in the bidding,and an hour later when we started our big auction most items had bids on them.The raffle for the hamper we put together was selling really well,having an estimated value of $1300 worth of goods.We started our main auction and we were surprised at how well some things went for.So we can now announce our total for the day was $7370.This total is made up of silent auction,main auction,raffle tickets,100 club and a surprise donation from Kimbo from the CORFIELD TAVERN of $823.We would very much like to thank Bob Uttenbrook of the Gosnells Football club,who in a short space of time Bob had got a huge amount of goods for the auction.Thanks  to Norm Barratt of the Gosnells Football Club.Norm is the outgoing president and he donated a custom made esky for the auction, he is top bloke and our family were touched by his generosity and the kind words he spoke.A huge thanks to our neighbour Steely ,also member of the football clubs committee for his efforts in getting auction items and selling raffle tickets. We would also like to thank THREEPLAY Acoustic for playing for the first part of the day.

THREEPLAY Acoustic

Thanks to everyone.

Both Tiff and I would just like to thank a few people and businesses for their support.Cally at PRO AUTO.Renee and Nat at ADDICTED 2 HAIR.David at GIBBONS HOLDEN.Bob,Trevor and Steely at GOSNELLS FOOTBALL CLUB.Elisha at the ABN Foundation.Kimbo at CORFIELD TAVERN.W.A. CHARITY DIRECT.Lorraine and Del A'Court.Hayley White and K.L.I.A.Martin Dillon at PINE RIVERS RSL QLD.To all the people and businesses not listed you are not forgotten and we have tried to list all donations so thank you to everyone for your support and we hope for your ongoing support.We have met some absolutely tremendous people and your generosity is greatly appreciated.

Flights booked.

We have now booked our flights for our long journey to Texas.Leaving from Perth on the 27th Jan 10 and arriving in Houston 22 hrs 19 mins later if all goes to plan.We have a couple of stop overs in Sydney,San Francisco and Denver,so that will be good for the kids.Thanks to Elizabeth Anderson at FLIGHT CENTRE Forrest Lakes for booking our flights and taking no commission this saved us a lot of money.

Auction Items

GOSNELLS POOL AND SPA:Various pool products valued @ $200
PRO AUTO:Car service valued @ $180
WATERSHED WINES:1 dozen mixed bottles of wine valued @ $360
NEXT GENERATION FITNESS,Bibra Lake:2 x 8 visitor passes valued @ $99ea
MURL INTERNATIONAL:2 x Remote controlled helicopter valued @ $240ea
No1 NAILS:Full set of nails valued @ $50
GOSNELLS HOTEL:Voucher for dinner valued @ $60
ADDICTED 2 HAIR:Voucher for a shampoo,cut,blow dry and eyebrow wax valued @ $80
LIZ GARNET:1hr Photography sitting at your home + 8, 8"x10" photos valued @ $300
GOSNELLS AQUARIUMS AND PUMPS:4 X Submersible pond pumps valued @ $25ea
JET CYCLES TACKLE AND DIVE:Various billiard and darts accessories valued at $250
HEAVENLY SKIN:1 x facial & non surgical face lift & hand massage valued @ $80
BARBECUE BAZAAR : LORRAINE:Stainless steel BBQ tool set,fish grill and deluxe meat thermometer valued @ $250
EZYFLIGHTS:Voucher for 2 x Economy flights to Brisbane,Gold Coast or Cairns.Winner must pay $49 ea for connecting flight from Sydney and book a minimum 7 nights accommodation at an affiliated resort ranging from 3 & half to 5 star.Winner has 1yr to book holiday and 2yrs to redeem voucher valued @ $950
POT BLACK,GOSNELLS:Pool cue and case valued @ $150
DEL & LORRAINE A' COURT:SYDNEY FC Jumper signed by team(including socceroos)
STEELY:Signed picture of Carlton Football great Peter Bosustow in his 1981 Mark of the year.
BARBEQUES GALORE:Outdoor lantern,cake plate w/server,chip 'n'dip set valued @ $105
EAST FREMANTLE F.C:Signed Football Jumper(including Keer,Sandilands,Hasleby,Staker,Kennedy,Peake)
GOSNELLS F.C:Custom aluminium esky filled with alcohol valued @ over $500
CITY MOTORS HOLDEN:HSV Shirt,wheel balance & rotation valued @ $120
PERTH GLORY:Signed soccer ball and shirt
FERRARI MENSWEAR:Voucher valued @ $150
SWAN YACHT CLUB:2 Dozen bottles of wine
BENDIGO BANK:CAROUSEL Shopping voucher valued @ $200
CLUBS W.A. :Beer & wine
PRO AUTO:Sonax(Penrite oil) car care pack valued @ $140
GIBBONS HOLDEN:Car service including vaccum valued @ $200

A BIG THANK YOU

We have had some great news this week in regards to our airfares.A couple of months ago I wrote a letter to the ABN FOUNDATION who are a charity and they passed on our letter to W.A. CHARITY DIRECT.After talking with Mr Peter Carter one of the trustees we decided to fill in the formal application and ask them to assist with our airfares.So after our bad news on Monday we had some fantastic news on Wednesday.W.A. CHARITY DIRECT are going to assist with our airfares this is a major contribution and along with GIBBONS HOLDEN our airfares are now covered.We as a family sincerely thank both Gibbons Holden and W.A. Charity Direct for their generous support.

MRI Results

Just a brief description of Jayda's neurology appt today.We had some good and bad news so the good first.Her hemangioma behind her left eye has shrunk to nearly nothing and that her brain is developing on track ,a big relief.Now for the bad news.Jayda has developed a blockage in her basilar artery,at the moment another artery is compensating for this but the risk of her having a stroke is now quite high.

The neurologist is passing these results on to a arterial specialist for further opinion on a plan.Continued monitoring eg: frequent MRI/MRA or even surgery as an option.But we just have to wait and see what the specialist says.This has changed many things for us so we really need those donations coming in or silent auction prizes.

Bring on summer!

As the weather is getting warmer we've been getting the backyard pool ready for swimming. It was a hot and humid Wednesday when I decided to take the girls for a swim in the afternoon. I hadn't yet bought Jayda any bathers but funnily enough a pair of Amelia's bathers from last year fitted perfectly, I guess that's one of the benefits of being bigger than average.

Amelia loved the pool last summer but was a bit apprehensive this time round, I believe it's an age thing,she wanted dad to take the creepy crawly out so it wouldn't get her! As for Jayda she had no concern about being in the chilly water but she did have a tight hold on me. Jayda was more comfortable in the floaty ring, she loved it.The two of them then sat on the pool lounge and just laid there relaxing. I definitely think this summer the pool will be put to good use.

Silent Auction Update

We now have the venue and date confirmed for our silent auction.In addition to the auction there will be a sausage sizzle and band.

VENUE:Gosnells Football Club  corner of Walter st & Terence st,Gosnells
DATE:Sunday 6th,December
TIME:12:00pm-6:00pm

SAUSAGE SIZZLE:1:00pm
BAR OPEN:1:00pm-6:00pm
LAST BIDS:4:30pm

GOOD LUCK BIDDING & HOPE TO SEE YOU ALL THERE

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

A Big Thank you

I wanted to post this up separately to our other donations.I have just received a phone call on a big donation.GIBBONS HOLDEN in Gosnells is donating a $1000 towards our travel to the U.S. This is huge for us as our travel costs are about $10 000.So a big Thank you to Andrew Stott,David Britton and the rest of the team at GIBBONS HOLDEN.The support we have had from our local community has been fantastic and our whole family is very grateful to you all

Silent Auction and Donations

We are getting some great items for our silent auction and some big donations.I think we will have the auction in early November that gives me plenty of time to get more prizes,book venue,advertising etc.As we get more prizes I will add them on.

SILENT AUCTION PRIZES

GOSNELLS POOL AND SPA:Various pool products valued @ $200
PRO AUTO:Car service valued @ $180
WATERSHED WINES:1 dozen mixed bottles of wine valued @ $360
NEXT GENERATION FITNESS,Bibra Lake:2 x 8 visitor passes valued @ $99ea
MURL INTERNATIONAL:2 x Remote controlled helicopter valued @ $240ea
No1 NAILS:Full set of nails valued @ $50
GOSNELLS HOTEL:Voucher for dinner valued @ $60
ADDICTED 2 HAIR:Voucher for a shampoo,cut,blow dry & eyebrow wax  valued @ $80
LIZ GARNET:2hr Photography sitting valued @ $300
GOSNELLS AQUARIUMS AND PUMPS:4 X Submersible pond pumps valued @ $25ea
JET CYCLES TACKLE AND DIVE:Various billiard and darts accessories valued at $250
HEAVENLY SKIN:1 x facial & non surgical face lift & hand massage valued @ $80
BARBECUE BAZAAR : LORRAINE:Stainless steel BBQ tool set,fish grill and deluxe meat thermometer valued @ $250
EZYFLIGHTS:Voucher for 2 x Economy flights to Brisbane,Gold Coast or Cairns.Winner must pay $49 ea for connecting flight from Sydney and book a minimum 7 nights accommodation at an affiliated resort ranging from 3 & half to 5 star.Winner has 1yr to book holiday and 2yrs to redeem voucher valued @  $950
POT BLACK,GOSNELLS:Pool cue and case valued @ $150
DEL & LORRAINE A' COURT:SYDNEY FC Jumper signed by team(including socceroos)
STEELY:Signed picture of Carlton Football great Peter Bosustow in his 1981 Mark of the year.
BARBEQUES GALORE:Outdoor lantern,cake plate w/server,chip 'n'dip set valued @ $105
EAST FREMANTLE F.C:Signed Football Jumper(including Keer,Sandilands,Hasleby,Staker,Kennedy,Peake)
GOSNELLS F.C:Custom aluminium esky filled with alcohol valued @ over $500
CITY MOTORS HOLDEN:HSV Shirt,wheel balance & rotation valued @ $120
PERTH GLORY:Signed soccer ball and shirt




DONATIONS

WACKET:Paul $250
ACS TECHNOLOGIES:Andrew and Richard $600
DISTINTIVE TROPHIES and BADGES:$50
ANZ GOSNELLS:Melissa $20
JOHN HUGHES:$250
LS1 FORUM:Various member contributions $100
GIBBONS HOLDEN GOSNELLS:$1000 towards travel expenses
CAROUSEL DENTAL:Cy and Anis $500
KARRATHA L.I.A.:$640
IAN-ILONKA FOODS:$500
LANGFORD HOTEL:$250
GOSNELLS LIONS CLUB:$500
PERTH MEDICAL LAB:$1000
PINE RIVERS RSL Sub Branch QLD:$1000
PINE RIVERS LADIES RSL Auxillary QLD:$1000
KARRATHA L.I.A.:$695
BARBECUE BAZAAR:$100
W.A. CHARITY DIRECT:Balance of flights approx $4500
JOHN ELIOT & WORK SOLLUTIONS:$228
PETA & NEVILLE MOSES:$500
WORDWIDE ONLINE PRINTING GOSNELLS:50 x Laminated flyer's to go with our money tins,100 flyers,500 raffle ticket books
GOSNELLS FRAMING GALLERY:Framing of Sydney FC Jumper

Reminderbands

Well these have been selling like hotcakes, so I have ordered another 500.If you want to purchase one you can get them at ADDICTED 2 HAIR,PRO AUTO,CAROUSEL DENTAL,GOSNELLS WOMENS HEALTH CENTRE,CENTRECARE Gosnells,NEXT GENERATION FITNESS,Bibra Lake.They will also be sold in BUGGLES CHILD CARE CENTRES across W.A.or you can buy one through us.Thanks to everyone for supporting Jayda's PHACE Journey :)

My first Perth Royal Show

On Thursday the 1st of October we visited the Perth Royal Show. The weather was lovely sunny and warm. Our adventure started off with a train ride to the show grounds which is one of Amelia's favourite things to do. On arrival to the show the first attraction we visited was the Pigeon and Poultry Pavilion,it was filled with all varieties of pigeons and roosters. The noise coming from the cages was amazing who knew there were so many types of roosters? We then visited the Dog Pavilion,it had many breeds of dogs all of which were award winning for various reasons.

With Amelia's pleas we then headed off to the Kiddies land where there were rides and games for the kids. Amelia and myself went on a flying elephant ride, her dad and herself went on the merry go round and the spinning tea cups rides. She also tried her luck at the laughing clowns and pick a duck games.

The Farm Animals Pavilion was an all round favourite. Jayda enjoyed watching the kids (baby goats) play and climb. Amelia liked the cows and bulls and even the timid wombats. The baby ducks and chickens were my favourite along with the rabbits.

Then it was off to Sideshow Alley, just for the big kids. Kade had fun on the ghost train ,bumper cars and the Nitro ride. Considering all the screams, noises and flashing lights Jayda was sound asleep, exhausted from a big day out.

Finally the best part of the show and the only way to end the day,we watched the fireworks. This surprisingly didn't scare Jayda she was just taken in by the bright explosions in the night sky.

Reminderbands

Our reminderbands have arrived and i will start getting these out asap.We have decided to sell them for $5.00 ea,i have three sizes L,M,S.So get in quick i only got a small amount to start off,i will order more when we have half left.I am hoping that these will do well.

Reaching My milestones

At 5 months of age,Jayda has two of her bottom teeth coming through. Constantly putting everything she can get her hands on into her mouth, her teething rings are coming in handy.

Jayda loves to squeal and coo, her other favourite sound is blowing rasberries.

Jayda is now sitting up all on her own but she still looses her balance when distracted,thank goodness for pillows. Jayda has found her feet and when lying on the floor she wants to have them in her mouth. She likes to reach for everything she can see and at times nearly rolls over to her stomach.

BBQ on the river

Taking advantage of the warm spring weather yesterday, we went for a BBQ along the river at Mason's Landing. One of our old time favourite picnic spots hidden away along the Canning river surrounded by the wildlife and bush. Amelia and Kade had fun on the playground and kicking the footy around. While Jayda enjoyed herself on the rug and being out in the fresh air. Dad cooked a tasty dinner on the BBQ and mum sat back to soak up the sun and relaxed.

Tadpoles in the river's beds and ducks waiting to be fed. The chance for Amelia to get her feet dirty in the mud. Kade racing along the footpaths on his scooter, and Jayda doing what all babies do best had a sleep in the pram. Over all the day was lovely and we all can't wait for the warm sunny days to come.

DONATIONS :Thank You's

I thought i better get a list up of donations that we have so far.Again excuse me if i have missed something or made a mistake(i tend to forget things) Cheers Matt

GOSNELLS PRINT-500 flyer's for sausage sizzle

SAUSAGE SIZZLE

FOODWORKS GOSNELLS-sausages
BAKERS DELIGHT THORNLIE-50 buns
BRUMBYS GOSNELLS-50 buns
HEY YOU PET RESORT-soft drinks

SILENT AUCTION PRIZES

GOSNELLS POOL and SPA-$200 worth of goods
No1 NAILS-Voucher
GOSNELLS HOTEL-Voucher
PRO AUTO-Car Service
DAVE-RC Helicopter

DONATIONS

WACKET-Paul $250
DISTINCTIVE Trophy and Badge Supplies-$50
Melissa ANZ GOSNELLS-$20

REMINDERBANDS, BANK ACC and TEXAS

We got an email today confirming that our reminderbands have been shipped,this should take around 7-10 days.I have bought some money tins,I'm just trying to get someone to donate their time and business to make up some flyer's to put on the tins.I also need the flyer's to hand out to businesses.Basically something with a colour picture of Jayda,what her benefit is called and a bit about her and what she has.I have had a price,but if someone wants to do this as their donation that would be GREAT!

I have been back in contact with the bank,the account is now set up,it will be held in trust for Jayda,it will not earn interest,it will be set up so people can go to bank and put in the money,it will be run by us for now.We could not call the account Jayda's PHACE Journey as this would mean registering as a business,and then running as a non profit organization.As this charity is just for Jayda the bank has said it can be run like this.The only money that will not be spent directly on Jayda will be for the purchase of more reminderbands,blank DVDs,copy paper and plastic sleeves.We have payed for all that so far and that we don't mind.

Still waiting to here back from TEXAS CHILDRENS HOSPITAL,they have confirmed receiving fax so it's wait and see.I can say that the Dr we have been corresponding with will be personally looking at Jayda's records.She has been wonderful so far helping us enroll Jayda in the PHACE Registry.This is a big thing for us as we feel very strongly about Dr's and researchers being able to learn more,and as PHACE kids are so different to each other.

One last thing the Followers gadget has disappeared this is a Blogspot problem,so if you do want to be one just be patient until it works again.

Cheers Matt and Tiff

SAUSAGE SIZZLE

Okay date is now confirmed for a sausage sizzle as well as a silent auction.As I have said ,the girls at ADDICTED TO HAIR have organized this.They have had all the food and soft drink donated,I will list the businesses,but mind is blank at the moment.They have also contacted the EXAMINER newspaper and they are going to do a story(and photo) with us and the staff from ADDICTED TO HAIR.I mentioned a silent auction and I will do a list of what prizes there will be.So this is the time,date and place of the sausage sizzle.

DATE: 24th OCTOBER 09

TIME: 11:00AM-2:00PM

VENUE: ASHBURTON VILLAGE SHOPPING CENTRE: 62 Ashburton Drive GOSNELLS

So we hope to see everyone there,if you don't want a sausage I'm sure there will be something to take your fancy in the silent auction.Again thanks to the girls they have a few more things they are trying to do,but I will just keep hush at the moment(IT'S BIG)

Fundraising

Well as many of you know we are fundraising to get Jayda to the U.S. We have been hard at work writing letters of support to businesses and giving them a DVD copy of Jayda on Today Tonight.We have ordered 295 Reminder bands which have Jayda's PHACE Journey on them,they should arrive early October.Once we get some cost estimates and treatment proposals back from the TEXAS CHILDRENS HOSPITAL i will then approach the ABN Foundation to see how they can help.

I would like to thank these people and businesses for there help so far.Cally at PRO AUTO who is helping in getting ABN Foundation to help us,and the many other ways she has offered to help.Renee and Natalie and staff at ADDICTED TO HAIR who are organizing a sausage sizzle for October.We will let everyone know when dates etc are finalized.

We are in discussions with the bank in setting up an account this will be called Jayda's PHACE Journey Benefit,so once this is set up we can start accepting donations.We did not realise how much work goes into something like this so thank you to everyone for supporting our precious little one.

Our Goal

Our goal is to get Jayda to the U.S. to the TEXAS WOMENS CHILDRENS HOSPITAL where they have a specialist Vascular Anomalies Clinic and doctors that specialise in PHACE Syndrome.More importantly for Jayda they have the doctors with the experience and expertise to properly evaluate Jayda's anomalies.We are currently in discussions with TWCH and we are now waiting for there evaluation of her medical records and the costs involved.

From the beginning of this journey we have been huge advocates of sharing all we can so that the medical community can figure out what causes this association of physiological abnormalities.We are enrolling Jayda in medical research efforts even though this is being conducted in the U.S. Much research is being done on PHACES but nothing is definitely known and doctors continue to use what limited resources they have to understand why PHACES occurs.

Jayda on TODAY TONIGHT 2nd September 2009

Late in October Jayda's Pop contacted Today Tonight, they did a story on Jayda to raise awareness on PHACE and infantile hemangioma's.They filmed us at the hospital with our dermatologist and at home.This is the story as reported by Today Tonight's Graeme Butler.

TODAY TONIGHT

September 2nd 2009

Baby Jayda

Reporter: Graeme Butler

At just four months, baby Jayda has little idea of the medical dramas that surround her - a now small blemish on her face is the only visible clue of a condition so rare it still has doctors baffled.

Dr Anne Halbert is a Dermatologist at Princess Margaret Hospital, she's been treating Jayda for what is now known to be "Phaces" syndrome - it's the name given to a series of anomalies of the brain, heart, and eyes associated with the Hemangioma birthmarks - only recognized in 1996, "phace syndrome is the combination of a large facial hemangioma with a range of either brain or heart abnormalities"

A facial Hemangioma is what many people refer to as a birth mark - and they're fairly common - patients with phace syndrome also have these birthmarks - but it's far more serious. Baby's like Jayda can have heart problems as well as enlarged or twisting arteries in their brains... in Jayda's case it's the carotid artery, "what these abnormal blood vessels are going to mean to her in the future we don't know there is the possibility that some of them could enlarge further and become an aneurysm. She could potentially have a stroke or she could lead an absolutely normal life we just don't know" and that "not knowing" is like sitting on a time-bomb for Jayda's parents Tiffany and Matt "we're at a loss where we don't know if she's going to have a stroke or if she's going to be fine and no one's been able to tell us what her future is going to hold and i suppose yeah it's a waiting game".

The first sign that anything was wrong came about a week after Jayda was born as a birthmark appeared and started to spread, "first it started off with just the small area on her cheek and as the days went by we noticed the areas across her forehead were starting come red she had like a white outline so we knew that that want' normal".

"It's very similar to a normal strawberry birthmark, except that it's much larger and it follows a certain pattern" What makes these hemangiomas potentially dangerous is they grow almost with a mind of their own - on the face that can threaten eyesight. "They do have a life of their own and that's the million dollar question is what makes it grow and what tells them to switch off if we knew how to switch them off more precisely it would be a great bonus for us."

Jayda's birthmark is now disappearing thanks to a chance break-through in France where it was discovered that a common drug used to treat high blood pressure had a dramatic effect in stopping and reversing the growth of hemangiomas."At the moment she's on the propranolol, the old heart medicine that we now use and she's remain on this until we're completely happy that the hemangioma is not showing any further signs of growth."

That's great news for parents - who like Matt and Tiffany often are distressed to see a very obvious blemish on their new born while medication is treating the outward signs of the PHACE Syndrome - treating the other conditions is much harder - "is she going to live a full life is another thing that crosses our mind we just don't know."

Tiffany and Matt are just glad they acted quickly when Jayda's birthmark started to grow - they say other parents need to be aware too, "they can grow extremely fast and cause problems that quick that if you don't do something you know you're probably in trouble you've got to act up on it."

Make an on-line slideshow at www.OneTrueMedia.com

What is PHACE Syndrome?

The acronym PHACES refers to the association of a large segmented hemangioma,usually on the face or neck, in combination with one or more of the anomalies of the brain, heart or eye.

P-Posterior fossa malformations and other structural brain defects
H-Hemangioma
A-Arterial (cerebrovascular) anomalies
C-Cardiovascular anomalies
E-Eye anomalies
S-Sternal cleft defects

PHACE Syndrome was first reported by Dr.Ilona Frieden in 1996. PHACE often presents in the first few weeks of life through a facial hemangioma. PHACE can be diagnosed by imaging of the head, neck and chest. The imaging is usually performed through the form of MRI, MRA, sonography and ultrasound.

Children with PHACE Syndrome will have to be assessed by a number of specialists including dermatologist, ophthalmologist, cardiologist and neurologist. Each child diagnosed with PHACE Syndrome may have different medical issues. Some are mild and some are much more severe.
PHACE was once thought to be rare,but now it is thought as being uncommon with many cases going unrecognised.

(Information sourced through NOVA)

What is a Hemangioma?

Hemangioma are very common growth of skin that are made up of small blood vessels. They are benign tumours. Quite common, up to 1 of every 10 babies will have one. The hemangioma are usually noticed on the skin within a few days to weeks after birth. At first they are often mistaken as a "bruise" or "scratch". They can occur anywhere on the skin but are most common on the head and neck. Hemangioma have a growth phase of 6-12 mths but most of the growth will usually take place in the first 3 to 4 mths of life. Hemangioma will then have an involution phase which can take a number of years to completely disappear. The growth rate and shrink rate will differ between children and nobody knows exactly what causes a hemangioma. What is known that it occurs more in Caucasian females. Most hemangioma cause no problems and don't need treatment,but there are some uncommon problems that still do occur. Very large segmental hemangioma on the face can rarely be associated with birth defects of the brain, heart or eyes, also known as PHACE Syndrome.

Jayda's Story

Jayda was born on Friday the 17th of April 2009, at 11.44am. She was 39 wks and 2 days term. Jayda weighed 7lb 3oz and was 52cms in length. Throughout the pregnancy there were no concerns except for low amniotic fluid,which I also had with my first born. It was a natural birth with no complications.

The midwife had noticed a bruise like mark on her left cheek,she had the pediatrician come and look. He said to leave it for a few days and if it hadn't gone then it may be a birthmark. I went home from hospital on the same day and was followed up by midwifery home visits for the following few days. One of the midwives mentioned the mark when Jayda was 4 days old telling us that she thought it was a port wine stain,it obviously hadn't gone away so she contacted the hospital and organised an appointment with the pediatrician.

When Jayda was 7 days old we saw the pediatrician who examined her,telling us that he wasn't certain but he thought it was a port wine stain. Over that week she had also had slight redness from the top of the left hand side of her head running down to the top lip and over her left eye and also over her right eye and forehead, 3 separate and distinctive areas come up. He decided to refer us to a pediatric dermatologist.

Weeks had gone by and we hadn't heard from the dermatologist and Jayda's slight redness had grown and become almost blister like. Jayda's dad didn't want to sit around waiting for a Dr and because we had started researching port wine stains and the connection with Sturge-Webber syndrome we were worried. We took Jayda to the ER at PMH children's hospital and on arrival she was examined and brought straight through to have a Dr assess her. The doctor was informed that there was a possibility of the birthmark being a port wine stain but he soon told us he thought it was a stork bite and that they usually get worse before they get better. At this stage we didn't know who to believe and it was as though nobody could be really sure. He made arrangements for a brain ultrasound for the following day.

Jayda had the ultrasound done and the same Dr told us that the results were normal,and told us to wait for the dermatologist to contact us with an appointment.Jayda was 1 mth old by the time we had an appointment with the dermatologist. At this appointment she told us that she agreed it was a port wine stain and that she needed Jayda to have a MRI on her head to rule out Sturge-Webber syndrome. She was going to start laser treatment then and there but then decided to let us go home and come back in a week when everything had all sunk in.

On this next appointment the look of the birthmark had changed dramatically and the Dr changed her diagnosis with help of a second opinion from a colleague. She informed us that the growth of it had indicated an infantile hemangioma. We had no idea what this was we were just relieved it wasn't a port wine stain or sturge-webber syndrome. Then we were told about the possibility of PHACE syndrome.After being informed that she would need to see an opthamologist,cardiologist and neurologist,we began to worry again.

The Dr started Jayda on a daily dose of prednisolone. This is an oral steroid that would help to keep the hemangioma from growing anymore. Jayda had her MRI on her head later that week. The results showed no Posterior fossa abnormalities or brain development problems,we were only told of 2 arterial anomalies. The dermatologist didn't know much about it just that they were tortuous. Jayda also has hemangiomatous tissue within the anterior left orbital cavity surrounding the lateral,superior and medial margins of the left globe.

We then saw the opthamologist when Jayda was 7 weeks old,he didn't see anything wrong with her eyes, he just wants to review her at 6 mths of age.

We then saw the cardiologist at about 2mths old. She had an ECG and heart ultrasound. They noticed a small hole in her heart but he was sure it was normal and it would close on it's own. He also explained that there was a finding of an aberrant right subclavian artery but it was a normal variant, it was only that we were looking that we knew about it,all was fine. He gave the dermatologist the all clear to start Jayda on another drug called Propranolol.The dermatologist said that this would mean Jayda wouldn't have to be on the steroid for long and that the Propranolol was going to do the same job but with less side effects. She also explained that it was an old drug usually used to treat children with heart problems but was new for treating birthmarks.

We were now being seen weekly by the dermatologist to keep up with the progress of the drugs. The steroid had worked significantly in reducing the redness and thickness of the hemangioma as well as the Propranolol. By 4mths of age Jayda was weaned off the Prednisolone but she is still on the Propranolol.

We finally had an appointment with the neurologist,who hadn't ever had a case of PHACE syndrome,so she invited a neurosurgeon along. They told us that there was a chance that she would suffer a stroke usually between 3mths-18mths of age mostly occurring at 8mths. They weren't completely sure.They said that Jayda had an abnormal circle of Willis with markedly tortuous left cervical internal carotid artery. There was also a nest of tortuous branches arising from the left side of the distal basilar artery,one of which likely represents a tortuous left superior cerebellar artery. The left posterior cerebral artery arises directly from a prominent posterior loop of the internal carotid artery. The right supraclinoid internal carotid artery also appears to bifurcate quite high. They want to see Jayda every 3mths for clinical exams and then redo a MRI at the age of 2yrs.

Jayda has had her dermatology visits reduced to monthly. Jayda is now 5 mths old and the hemangioma hasn't shown any sign of growth. The continual doses of Propranolol are keeping it at bay.

Jayda will be having a MRA scan done anytime now and this will hopefully be able to show us if there has been any change to the arteries.