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The NSW PKU Journal Spring 2010

The NSW PKU Journal

Spring 2010

Inside this issue:

Presidents Piece 2

Fundraising Corner

Roll of Honour

3

3

Meet the Research Team 4

Adult Metabolic Clinic

Progress Update

Contact Details

Pinnacle Low Phe Bread

5

5

5

A Note from Kerri-MDDA

IEM Grant Update

6

6

Adult Health Care Update 7, 8, 9

New Idea Article from 1962

provided by Deanne Owens

10, 11,

12

Youth Camp 2010

Introducing Malcolm

13

Camp Photos 14, 15

Christmas Party 2010 16

Winner

My Story Competition

Runner Up

17

18

Ruuner Up


19

Choices Gluten Free

Products

20

New LP Products 20

To promote awareness of PKU:

- by providing information and support to families affected by PKU;

- by actively re-establishing contact with adults who have PKU and do not attend the

Adult Metabolic Clinic;

- by supporting research, including fundraising for the purpose of research into the

treatment of PKU; and

- by lobbying Government bodies where appropriate.

MISSION STATEMENT

The PKU Association of NSW Inc. ABN 78 410 895 701

PKU Youth Camp 2010

The NSW PKU Journal 2 Spring 2010

President‟s Piece

Welcome to the Spring Edition of our Associations newsletter. With many

messages to share with our members, this is a bumper edition. At the

time of Publishing the 4th PKU camp is over. Having spent a few days

visiting the kids on camp, it was great to see them all having fun and

participating in new challenges. We will have a full report on the Camp

in our next newsletter.

The main focus of the Spring Newsletter is to increase the awareness of

the Adult Health Care. Upon permission from the MDDA, we are repro-

ducing several articles and key messages relating to Adult clinic from

their Issue 43 Edition. We have also included the official IEpM Grant

Update for your reference.

On the research front, it is with great excitement to share with you all that the colony of PKU

Mice, to be used for Professor Christodoulou‟s research, have arrived in Australia and are set-

tling into their new surroundings. Professor Christodoulou writes: “We got 9 females and 10

males. They need to become acclimatised and then start doing the thing that mice do (breed!!),

so we can build up the colony. We hope to have it established well enough to be able to start the

experimental work at the beginning of next year.” As we move forward in this exciting stage of

PKU research, we invited Professor Christodoulou and his research team to tell us something

about themselves.

Still on Research, we are very fortunate that the research fundraising continues to be success-

ful with events and one off donations warmly received. Whilst the research funding for this

year has been secured, we are actively chipping away at the funding requirements for FY11.

With the mice colony up and running, we knew there would be a greater challenge going for-

ward. Our target for FY11 is $105,000. We‟ve included in this edition a fundraising barometer

together with an honour (thankyou) roll to acknowledge those active fundraisers and gener-

ous individuals.

Congratulations to Harry Owens from Crookwell who is our winner in the My Story Competi-

tion. Harry‟s story won him an iPod Nano. It was such a tough decision to decide the winner

that we have awarded two extra runners up Prizes. Samantha Wallace from Dubbo and

Harry Grigson from Perth have both won iPod shuffles. All three stories are included in this

newsletter.

October looks set to become the busiest of this calendar year. We commence with the 4th Na-

tional PKU Youth Camp to be held over the week commencing the 4th October. We have 25

children attending the week from NSW, QLD and Victoria. In this newsletter, you‟ll meet this

year‟s camp Head Coordinator Malcolm Bargh. We have been particular fortunate that we

were successful in gaining a St George Foundation community grant to assist in the funding

of the camp. This has taken considerable pressure off the Association‟s finance‟s. Later in the

month we celebrate the 2nd Gala Dinner for PKU Research at the Dural Country Club. Last

year‟s event was a terrific evening and we hope to replicate the success again on the 23rd Octo-

ber. Details of the dinner are again in this month‟s newsletter or at our website or contact

Julie Pankhurst on 0403-331-360 for table reservations. Hurry, the tables are filling fast. I

hope to see as many of you there supporting our PKU research as possible.

Finally, with Christmas just around the corner, please watch the Website for the Venue of

this year‟s Christmas party on Sunday 28th November. There will be fun and games and a

Secret Santa for all children under 12. www.pkunsw.org.au

Andrew


Fundraising Corner As this newsletter goes to draft, some lucky sole had won the Rotary Whitewater Duck Race of

2010. The 1st prize went to Tony Murray of North Richmond. 2nd prize was won by Judith

Banks and 3rd prize went to Gerda Head. With every ticket sold for this duck race, the PKU as-

sociation receives a percentage of the sales. A big word of thanks to Remona Coleman who again

coordinated with the Rotary Club of Kurrajong North Richmond ticket sales on behalf of the as-

sociation. This year Remona raised $900 with proceeds to support the funding of the kids camp.

Also,

Special thanks to Lucia Tiloca who has also been running the Colgate Toothbrush fundraiser.

We hope to be able to report on its success next newsletter.

Roll of Honour

The PKU Association, family and friends would like to thank the following for their assistance to

our fundraising targets:

NAME DATE AMOUNT PURPOSE

A & J Keels 28/09/2009 $ 100.00 Association

R Jones 25/11/2009 $ 200.00 Association

N Cullen 14/12/2009 $ 50.00 Association

D Cullen 14/12/2009 $ 50.00 Association

P Cullen 14/12/2009 $ 50.00 Association

P McDonald 14/12/2009 $ 50.00 Association

B Cullen 14/12/2009 $ 50.00 Association

O Lloyd 14/12/2009 $ 116.00 Association

A Tilocca 11/01/2010 $ 30.00 Association

R. Eckels 11/01/2010 $ 50.00 Association

M Hopkins & J Robertson 11/01/2010 $ 150.00 Association

BK Mortlock 11/01/2010 $ 50.00 Association

JA Lumsden 11/01/2010 $ 50.00 Association

RM Bray 11/01/2010 $ 25.00 Association

M&N Butler 11/01/2010 $ 75.00 Association

A&E Goodacre 11/01/2010 $ 100.00 Association

B Leonard 11/01/2010 $ 50.00 Association

G. Penman 14/01/2010 $ 250.00 Association

M&T Pankhurst 20/01/2010 $ 10,000.00 2010 Research

S. Tucker 4/02/2010 $ 31.00 Association

M Lever 24/03/2010 $ 100.00 Association

Westpac 31/03/2010 $ 10,000.00 2010 Research

A & J Mc Donald 7/05/2010 $ 405.00 Association

N Faro 7/05/2010 $ 200.00 Association

Kindykids Edensor Park 18/05/2010 $ 170.00 Association

L. Tilocca 11/06/2010 $ 1,415.00 2011 Research

Kells 12/06/2010 $ 100.00 Association

F Angemi 21/06/2010 $ 1,415.00 Association

Janet Andrews 3/07/2010 $ 5,000.00 2011 Research

Ruth Andrews 3/07/2010 $ 5,000.00 2011 Research

Z Mitter 27/07/2010 $ 100.00 Association

M&T Pankhurst 28/07/2010 $ 10,000.00 2011 Research

M Lever 7/10/2010 $ 200.00 2011 Research


Meet the Research Team

Gladys Ho M. Sc., B. Sc. (Mol. Biol. & Gen.) (Hons), Dip.

Ed.

Gladys Ho is a Science graduate of the Uni-

versity of Sydney, with a double major in

Biology and Biochemistry. She received

Class I Honours for her work on honey bee

behavioural genetics. She was awarded a

Master of Science in 2005 in the same field.

GLadys commenced working as a research

assistant at the Children‟s Hospital at West-

mead in 2005, examining the genetic muta-

tions causative for phenylketonuria. She is

currently undertaking a PhD to investigate

the biochemical effects of these genetic muta-

tions.

Professor John Christodoulou AM MB BS (Honours class II)

Professor and Director, Western Sydney Genetics Program, the Children's Hospital at Westmead

Associate Dean (Postgraduate Studies), Sydney Medical School, University of Sydney

John Christodoulou is a senior Australian human geneticist based at the Children‟s Hospital at West-

mead and has particular expertise in the diagnosis and management of individuals with inborn errors

of metabolism

John Christodoulou is recognised for his contributions to the field of human genetics:

member of the Executive Committee of the Genetic Services Advisory Committee, which advises the

NSW Dept of Health on policies for the delivery of genetic services;

previous President of NSW Branch of the Human Genetics Society of Australasia (HGSA) and im-

mediate Past President of the National Executive of the HGSA;

current President of the National Executive of the HGSA;

inaugural chair of the Health Delivery, Technical and Research Working Group of the newly formed

Human Genetics Advisory Committee of the NHMRC;

member of the Scientific Advisory Board of the Cyprus Institute for Neurology & Genetics;

Editorial Board member of the Journal of Inherited Metabolic Disease.

John's research focus is on genetic disorders which affect brain development and function such as Rett

syndrome, phenylketonuria and mitochondrial respiratory chain disorders, with a primary objective

being to better understand the biology of these and related disorders in the hope of developing targeted

therapies

Dr Xingzhang Tong MB Msc PhD

Xingzhang Tong is a medical graduate of the Fujian University of Traditional Chinese Medicine and

was a medical doctor in Liancheng Hospital, China. He immigrated to New Zealand to start his career

in scientific research. He was awarded an MSc (2000) and a PhD (2006) in Biochemistry at Massey Uni-

versity, New Zealand. Since 2006, he has been working as a research officer on development of a novel

treatment for phenylketonuria (PKU), at The Children‟s Hospital at Westmead, Sydney.

Pictured left to right

Gladys Ho, John Christodoulou, Xingzhang Tong


Adult Metabolic Clinic at Westmead Progress Report - June 2010

Provided by John Christodoulou

The Adult Metabolic Clinic is active, but not up to full speed yet.

A doctor from the US accepted the role to take up the position of specialist in adult

metabolic diseases at Westmead Hospital. Unfortunately his commencement date has

been indefinitely delayed. Consequently, the hospital has advertised for a local spe-

cialist for 12 months commencing in January. In addition to the specialist, a meta-

bolic dietician will soon to be appointed. It is also fortunate that the clinic has fund-

ing for a half-time metabolic fellow (medico training in adult metabolic diseases) to

commence next year.

In the meantime the clinic is operating (but not at full speed) with the assistance of

Dr Jane Holmes-Walker and Prof Bridget Wilken and hopefully all positions will be

filled early 2011.

Pinnacle Low Phe

Bread Mix $50.00/5kg box for all members

(plus postage & packaging costs)

Delivered to you by Parcel Post at

a cost of $7.50 for up to 20kg

within the Greater Sydney Re-

gion (Wollongong to Blue Moun-

tains to Central Coast) OR to the

rest of NSW at $10.75 for 1 box,

$13.50 for 2 boxes or $16.50 for 3 boxes. (Consider

ordering enough for 3 months until the next news-

letter).

For other states and NT, or if you‟re not sure

which zone you are in NSW, please phone Mere-

dith on (02) 9613 8609 or email chameleon-

[email protected] for the postal charges or to

arrange payment by internet banking.

If you wish to place an order within NSW, please

send a cheque or money order (for the number of

boxes plus postage) made out to The PKU Associa-

tion of NSW Inc. and post to:

Meredith Morris, 28 Griffiths Street,

Ermington, NSW, 2115

Contact Details President: Andrew McDonald

Phone: 0437 592 870

Email: [email protected]

Secretary: Bobbi Burgmann

Phone: 02 4294 2111

Mobile: 0429 400 253


Treasurer: Tony Morris

Phone: (02) 9613 8609


Postal Address:

PKU Association of NSW Inc.

28 Griffiths Street

Ermington NSW 2115

Public Officer: Debbie Colyer

Phone: (02) 9498 6549

Mobile: 0420 978 872


Editor: Vanessa Towers

Phone: 0407 264 332


Website: www.pkunsw.org.au


A note from Kerri… IEM Food Grant MDDA families worked for many years to establish this grant for the all

members of the IEpM community. To remain eligible for this grant you have individual responsibilities

such as maintaining your diet as evidenced by regular blood tests and keeping clinic appointments.

Please take note of the article below.

It is disappointing to hear of concerns about grant misuse. Please use the grant appropriately for low protein foods

and if you can‟t maintain your responsibilities you will not be eligible to receive the grant.

The MDDA negotiated these responsibilities for you to be accountable for the grant and expect that this will be re-

spected. Please uphold your end of the agreement. We fully support the Department ceasing the grant for failure to

comply with any of the eligibility criteria. Please read below if you are uncertain of your responsibilities. As I was

one of the primary negotiators I am happy to receive your feedback in this matter.

Kerri Carboon, MDDA Executive Director, 1800 288 460


Adult Health Care Update

Courtesy of MDDA News


We are now registered on Everyday Hero‟s

“No matter what occasion you can create your own fundraising webpage

(Everyday Hero page) in support of The PKU Association (Phenylketonuria) Associa-

tion of NSW. It only takes a few minutes to create your “Hero” page and it‟s free. Once

established, you can email your “Hero”page to your friends or even link it to your

Facebook, MySpace or Twitter profile - that way your family and friends will know

what a “Hero” you are. They can donate to your page and/or leave you messages of en-

couragement. So whether you are participating in the “City to Surf”, Sydney Mara-

thon or celebrating a Birthday/Farewell party and want the donations to go to the

PKU (Phenylketonuria) Association of NSW instead of gifts, just log into the

“Everyday Hero‟s” website, create your own personal “Hero” webpage and choose our

Association to support.

http://www.everydayhero.com.au/charity/view?charity=1230




Deanne Owens, mother of 3 children with PKU, kindly forwarded this article to the PKU

Association of NSW after her mother located this whilst cleaning out old magazines in her

shed. This is from New Idea dated January 31, 1962.


INTRODUCING MALCOLM

BARGH

Thankyou for the opportunity to introduce myself to your staff and parents for the up-coming

PKU Camp to be held at the Narrabeen Sports & Recreational Facility between Oct. 4 to Oct.

8, 2010.

I am a 51-year-old Retired Sergeant of Police, formerly with the NSW Police for nearly 28

years.

I graduated from the Redfern Police Academy in July 1981 and was stationed at Castle Hill

Police Station performing general duties for approximately 4 years before transferring to the

Tactical Response Group, based at Parramatta.

During that time, I was utilised in numerous high-risk situations including Sieges, Building

Entries looking for escapee‟s, and other dangerous armed offenders, high risk vehicle trans-

portations, Executing high risk search warrants for drugs and illegal immigrants, Crowd and

Riot situations, Bush searches and duties inside correctional facilities.

These duties included being conversant with a number of weapons and techniques utilised by

the NSW Police and this led me to ultimately being trained as a full- time Weapons and De-

fensive Tactics Instructor where I performed duties for the final 11 years of my service.

One of my principle roles was to co-ordinate and conduct numerous Weapons Instructor

courses for Operational Police within NSW, which were mainly held at the Goulburn Police

College and were each 7 weeks in duration.

During the Sydney 2000 Olympics I performed duty with the Bomb Squad as a Bomb Techni-

cian.

Since retiring in mid 2008 I have been residing with my partner Lynda Casey of nearly 5

years at Cherrybrook and have been undertaking an owner builder project to construct a

swimming pool, gazebo and large timber deck in our backyard.

During the last 5 years I have had the pleasure of knowing Andrew and Julie McDonald and

their son James, who has the PKU condition. We have socialised on numerous occasions and

also coincidently reside only several houses away from each other. I have also had the pleas-

ure of meeting and socialising with Tony and Meredith at some recent events for PKU.

In conversations with Julie and Andrew, the camp was mentioned and I kindly offered my ser-

vices to assist in the supervision of the up-coming event if required. My offer was soon ac-

cepted and I am looking forward to being able to assist where required to ensure that the proc-

ess is both a happy and rewarding time for all of the children/young adults involved.

I will be in attendance at the camp from Monday to its conclusion on the Friday and I wish to

assure parents that each individual child‟s welfare and safety will be one of my major priori-

ties and I can be contacted 24 hours a day should the need arise.

I look forward to meeting you all and thank you for reading this short introduction.

Kindest Regards

Malcolm Bargh

PKU CAMP 2010


PKU CAMP 2010

To see these great pictures and

more in colour visit our website

www.pkunsw.org.au


PKU CAMP 2010


Upcoming Events

6th November, 3pm Committee Meeting, Bankstown Sports Club

All are welcome

7th November

Metropolitan Sydney Carers Seminar 10am-3pm

A seminar for carers of people with rare genetic conditions

Email [email protected]

Phone 02 9211 1462

13th November, 6pm

MDDA Conference

Rydges Hotel, North Melbourne

Website www.mdda-australia.org

23rd November

End of Year Picnic - Central Gardens, Merrylands

Cornered by Cumberland Highway, Patons St & Merrylands Rd, Merrylands

Watch our website for further details

PKU End of Year Picnic

Come and join us this year for our End of Year

Picnic at Central Gardens, Merrylands on

Sunday 28th November at 11am

Central Gardens is a natural oasis of calm in the mid-

dle of busy Merrylands. It is bordered by the Cumber-

land Highway, Paton Street and Merrylands Road.

The 12 hectares of natural bushland with sparkling cas-

cades, bush areas and beautiful trees provide plenty of

space to stroll, play games, watch the birds and enjoy

the fresh air.

Car parking is located off Merrylands Road and Paton Street. On street parking is also available in

Paton Street

What to bring

Lunch and drinks

Chairs, picnic tables, Porta Shade, etc

RSVP


Phone: (02) 4294 2111 or 0429 400 253

Help us 'Stamp Out' postage expenses

The next time you pop down to the Post Office to buy a book of

stamps for your Guthrie cards, why not buy an extra book for PKU?

Each year the Association has postage expenses of up to $500

(excluding the PKU Journal postage) and we would love your help to

keep this cost down! If just 50 of our members each sent in a book of 10 stamps (valued at

$5.50) we would halve our bill and be able to direct these funds more

important things like research and the National PKU Youth Camp!

If you would like to help simply post a pack of stamps to PKU Asso-

ciation of NSW Inc. 28 Griffiths St, Ermington NSW 2115

PKU Assoc.


Sharing his Story won Harry

Owens an IPod Touch!

H i, my name is Harry Owens, I am 8 years old and I have PKU.

I go to school at St Marys Primary School in Crookwell and I am in

Year 3. There are 27 people in my class and we are the biggest and the best

class! My favourite things to do at school is maths and science and at recess and lunch we

play cricket and handball. We catch a bus to school.

It sometimes gets very cold in Crookwell and snows were we live. I like it when it snows be-

cause we get a day off school because the buses cant drive down Wades Hill into town be-

cause it is too dangerous. There are 156 kids at our school and it is the best school we have

our own church and I made my Holy Communion there last month. After the Communion

mass we went to The Bistro and I had hot chips and a special treat, an iced chocolate drink.

After that I went and played football.

I like football, I play Rugby League for the Crookwell Green Devils Under 9's. We play in

Canberra, Yass, Queanbeyan, Cooma, Goulburn and Crookwell. I go for Melbourne Storm

and my favourite players are Billy Slater and Cameron Smith.

I also like animals. I have lots of animals at our place. We have 3 dogs, Phoebe, Sheppy and

Biddy ( the best ), 3 cats, Nitro, Ginger megs and Mudge, a canary, a turtle, a sheep, a horse,

and lots of chooks. My favourite is nitro, he is really friendly and likes cuddles. When I was

little he used to run to me when I cried and he follows me everywhere I go around the yard

and down the creek.

I live in a small town called Binda, 20 minutes from Crookwell, It is a very friendly town and

we have lots of Binda BBQs and parties like at Christmas and New Years Eve and a big

cricket day down on the flat near the river on Australia Day every year. Last month we had

Christmas in July in the shearing shed with a Christmas tree and candles and a big fire in

the fireplace. My favourite thing to do in Binda is jump off the bridge into the river in sum-

mer and fish and put out yabby pots. Last week the river flooded and came right up to the

cricket pitch and a big tree fell down across the road.

I live with my older brother Ambrose, he is 11, younger sister River she is 8 months old and

Mum and Dad. My Nan and Pop live on the same property just next door.

My brother, sister and Mum all have PKU too and we are the only people around here that

have PKU. This year me and Ambrose are going to the PKU camp and it will be fun. We

drink PKU cooler. Mine is PKU cooler 15 and I have 3 a day. My favourite food is hot chips

with gravy and when my friends come over we have hot chips, popcorn and softdrink and

watch movies. I like scary movies. The biggest thing I don‟t like about PKU is not having

meat and telling people because they think I am different.

When I grow up I want to be in the army and I hope there is a cure for PKU so I don‟t have to

carry my PKU coolers around with me.

I think the best thing about PKU is that it is a healthy foods that we eat and that Ambrose

and River and Mum have it too. Me and Ambrose have races to see who can drink the cooler

the fastest and I always win because mine is a bit smaller than his.

Thankyou for reading my story.

Harry Owens


Hello, my name is Harry Grigson; I am 14 years old, I live in Western Australia and was born with

PKU. This is my journey of having PKU and how I have grown up with it and coped with battles here

and there.

At the moment I‟m currently in high school in year nine. I love sports such as footy, cricket, and tennis

and I support the Dockers. I like to play PS2, table tennis and swimming at the beach and my pool.

Going to the WAFL games and watching Swan Districts play is one of my hobbies. At school, I enjoy

science and would like to be a doctor or study medicine and find a cure for PKU or for Cancer. I study

Japanese at school and am hoping to travel to Japan on a camp next year, if my marks are good

enough. I also want to make it as far as I can playing football.

There are four people in my family. My Mum - Susie, Dad - Peter and sister - Molly. My Mum is a

primary school teacher. My Dad works in the mines up north and my older sister is currently in year

ten. We are a close family and have been on some great holidays. My highlights have been travelling

the Gibb River Road, visiting the Gold Coast, Melbourne, Broome, Bali and Uluru.

Ever since I can remember I have always loved taking my PKU supplement. My body craves it and I

never miss a Cooler. Most of my meals have stayed the same over the years. I haven‟t been one to try

new foods, I‟m just happy to eat the same regular diet I have for many years. During the past few

months I have started to experiment with foods and have tried eating different PKU foods and regular

foods which I have prepared myself.

I have some great mates and staying at their place is never a drama. I always take food that is easy for

me to prepare, such as pasta or tomato soup and bread. I‟ll also eat some food that they have prepared

like their vegetable dishes, salad or soup courses. Their families have known me for years and there

are never any questions or jibes made towards me, I feel at home.

PKU affects my life in both positive and negative ways. In positive ways, PKU is all about eating

healthy foods like lots of salad and vegetables. I am fortunate that PKU can be controlled through

food choices as other young people have conditions that can‟t be controlled as easily or the side effects

of their condition is much worse than PKU. I receive great support from my Mum and Dad and have

had to battle through some tough situations, they make me feel special in a way.

In negative ways, having PKU has made me face and deal with some really tough situations. At

school people will walk past me and say „Look it‟s the non- protein kid‟, „Harry, go eat some more

Protein‟, „Harry, you must be high on a protein‟ and „You‟re never gonna grow because you‟re so short

and you need protein to grow‟. In high school I have been affected by these comments the most,

mentally. I would wake up and not want to go to school because I knew I would get teased. I then

realised that they are the real losers because really PKU isn‟t stopping me from doing anything. But,

it‟s hard to stay positive day-in, day-out. I still have sleep over‟s at mates places and go out for dinner

and mostly have hot chips or a salad and all I am missing out on is just meat and wheat really and it

isn‟t the end of the world because it‟s not stopping me from anything.

I understand that there is always going to be someone out there better than me and someone out

there worse off than me regardless of the PKU. I think it is important to get this message across to

PKU kids and families who are struggling with it, we should look for the positives in life. I always

focus on being the best I can be at everything I do, but I do find it hard to study and am starting to

apply myself to study now.

If I was to serve my friends a PKU meal I would choose to give them my mum‟s famous ratatouille or

her delicious pumpkin soup. I would make them my signature dish, which is a chocolate biscuit and

cream log served with strawberries. This is made by sandwiching chocolate biscuits together with a

sweetened cream and then covering the whole log in cream. It is best made the day before serving and

add strawberries just before serving.

Harry Grigson


CONGRATULATIONS Runner Up Harry Grigson



CONGRATULATIONS Runner Up Samantha Wallace

Have you ever met someone who has PKU?

I know most of you reading this would say yes, but I know lots of people who haven‟t heard anything at

all about PKU until I tell them everything there is to know! And they wouldn‟t even know that PKU

actually stands for Phenylketonuria and every reaction I get is „what‟ or „huh‟.

Well now I will tell you a little about me, myself and I in my story.

My name is Samantha Wallace and as you would already know I have PKU. I am 12 years old and I am

enjoying my first year of high school. My favourite colour is purple and my hobbies are dancing, netball

and orienteering.

I live on a farm near Dubbo in Central Western NSW, with my mum, my dad and my sister, Katie. Also

a part of my family is my pet dog, Matilda and my sister‟s goldfish, Bubbles, Sushi, Goldie and Speckles.

Oh, last but not least, mum would not let me forget our flock of 68 sheep and one alpaca called Wally, in

the paddock.

My Nan, Pa, Uncle Bob and Aunty Kerry live on a property about 40 minutes away from us and we visit

them all the time. They have hundreds of sheep and cattle, as well as crops. My Uncle owns and trains

racehorses, as well.

My grandma, Uncle Robin, Aunty Sue and my cousins on the other hand live in Palmerston North on

the North island of New Zealand. We have been over there twice to visit them and the second time was a

special occasion. It was for my grandma‟s 80th birthday!

I am really interested in growing up (but not too fast!) to become a young adult and experience more in

life! I would like to grow up to become a scientist when I am older to help all those people who are sick

by finding a cure for cancer.

When I was little I used to get up to all sorts of things! I used to lie on the couch and drink my formula

out of a bottle (warm of course). That was my favourite thing to do in the mornings. I used to want to be

a vet or a swimming teacher when I was younger which I think is really cute!

I have lots of friends and they come over to my house for a sleep over sometimes. When they come over if

I was to serve them a PKU meal I would cook them low protein pancakes for breakfast. But if I was to

serve them a whole day of PKU food I would also serve them a toasted cheese sandwich for lunch that

has low protein bread and cheese in it. For dinner I would give them PKU pasta and last but not least

for desert I would make them mango sorbet or gelato with some sprinkles that don‟t contain much

protein, I assure you.

PKU affects me in my everyday life in a positive way when I feel that I am special and don‟t have to be

the same as everybody else. Also because when I go over to a friend‟s house I get to tell them all about

my PKU and show and tell them what I can and can‟t eat and how I make my formula.

In a negative way PKU affects me the most when friends bring in chocolate birthday cakes and they

totally forget that you can‟t have them at all. It also annoys me when people ask me why I eat different

things to everyone else and you have to explain to everyone.

Some good ideas that I have come up with, just between you and I, is to con my dad into making and

shaking my formula for me. That makes PKU a whole lot easier for me to manage! When we go away for

sporting events we take a thermos and a pop up silicon bowl. We fill the bowl with boiling water and

place in a steel camping mug into the bowl. Then we pour in my formula and then wait until it is heated

to just the right temperature. (It would just kill me to drink it freezing cold!)

Well that was my story, the story of Samantha Wallace.

I hope you enjoyed it and learn something about how you can deal or talk about PKU!


The PKU Committee warmly welcomes members and friends stories, events or

PKU news as contributions to the Newsletters.

Please feel free to contact me at [email protected]

New LP Products

SPC Fruit ‘n’ Jelly Splits

0.2g protein per 100g Freelicious Tea Biscuits

3.9g protein per 100g

Freelicious Nibblers Pizza

3.3g protein per 100g

The other low protein

products are:-

Garlic Bread

0.4p per 100g

Gingerbread Man

1.7p per 100g

Pikelet Pre mix (not made)

0.5p per 100g

Apple & Blueberry Crumble

1.1p per 100g

Choices provide Gluten & Wheat Free bread &

bakery products. We have listed below the

products which are low in protein. You can ei-

ther go into the shop or order online at

choicesglutenfree.com.au

They are located in NSW and deliver to your

doorstep in some areas throughout NSW, ACT,

VIC & QLD. There shop locations in NSW are:

Turramurra, Bella Vista, Bondi Junction &

Mona Vale

Bagels 0.4p per 100g

Baguette 0.4p per 100g

High Top Loaf

0.3p per 100g

Par Baked Buns

0.4p per 100g

Pita Pockets

0.4p per 100g

Gingerbread Cookies

1.7p per 100g Shortbread biscuits

1.9p per 100g

the nsw pku journal spring 2010 - pkunsw · the nsw pku journal spring 2010 the nsw pku journal...

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