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.