Here are some of the much loved members of the MPS
Family.
2006
Conference Photos
2004 Conference Photos
2002 Conference Photos
Family Day Photos
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If you would like your favourite photo/s
(maximum two) to appear here, please
email to the Webmaster with details of
name, syndrome, date of birth, when they passed away (if applicable), a short
comment about them and/or the photo and the city/town and State in which you live.
Alternatively, you can post your photo and information to the National
Office.
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Tabitha,
born 23/2/02 has Hurler Syndrome. Tabitha underwent a trouble free
successful unrelated cord blood transplant on 6/1/04 at Sydney Childrens
Hospital. She loves preschool, music, singing, jazzercise and doing
everything she shouldn't, because she can. The photos show Tabitha during
transplant and trying out her school uniform for next year. Tabitha lives in
Canberra. |
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Tom, born 5
November 1996 Sanfilippo
Type B. Tom
loves swimming and watching the Wiggles and
Barney videos, clapping his hands when he particularly enjoys a song.
Tom loves coming up to give you a hug. Tom also enjoys going to school
with his brother Jack,
and can still take part in many activities. Tom enjoys his food, much
of which he can still take by mouth. Tom loves riding in the car and notices whenever you turn
a corner to head for home. Tom lives in Sydney, NSW
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Jack, born
2 April 1995 Sanfilippo Type B. Jack loves the Wiggles and
Playschool videos. Jack enjoys watching all the people doing lots of
activities and being with family members and dogs Abbey, Jett and Bosco.
Jack is now confined to a wheelchair and can no longer take food by mouth
but he has lots of wonderful carers who come and help look after him and he
is constantly surrounded by his loving (and loud) family. Jack can be
helped to swim in the pool. Jack still goes to his special school with
his brother Tom.
Jack lives in Sydney, NSW. Jack is seen at left with little sister
Amy.
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Robbie, born
17 June 1981 Sanfilippo
Type A. Passed away peacefully on 1 January 2003. Robbie
lived in Ipswich, Queensland. Rob
loved being with his family, listening to music; Beatles,
Roy Orbison, Kenny G, easy listening music, watching his
favourite shows;
Heartbeat, Sale of the Century, Bugs Bunny and Donald Duck
cartoons, and he loved being talked to. Sadly missed
by all who knew and loved him.
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Ben, born
9 February 1995 Hunter
Syndrome, Ben loves to kick a ball around or
just play with bat and ball. He also likes to watch sport on TV.
Apart from The Wiggles and Hi-5, his favourite movies are Grease, Titanic,
Sound of Music, Wizard of Oz, Pretty Woman, The Full Monty (just to name a
few!). Ben lives in Penrith, NSW.
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Ryan, born 12
November 1991 Hunter
Syndrome. Passed away 7 December 2003
surrounded by his loving family. Ryan liked music, playing cars and duplo and watching television. He is seen in
the first photo with his sister Jessica (8 years
old) and his little brother Brenden (5 years
old). Ryan is sadly missed by all friends and
family.
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Mitchell, born
9 June 1999, Passed away peacefully 7 November 2000, Hurler Syndrome.
Mitch was always happy and had a smile for all. He loved the beach,
cheese balls, chupa chups, his bike and playing Playstation with his Dad,
Mum and brother and sister. He was greatly loved and is sadly missed by
all who knew him.
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Jack,
born 2 June 2000 Diagnosed with Hurler Syndrome in July 2001, Jack
underwent a successful Bone Marrow Transplant on 1 February 2002. He is
tackling GVHD at the moment and due to semi-isolation gets plenty of time
to watch his favourite Hi5, Blues Clues and Bear in the Big Blue House
videos. He still loves chocolate and adores his baby sister Lily.
Jack lives in Brisbane, Qld.
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Benedict, had Sanfilippo Syndrome. Ben was born on 24
February 1989. His favourite occupation
was eating anything and everything he could get his hands on. Ben lost many of his skills but still
lit up a room when he gave one of his famous smiles. Sadly Ben
passed away on 6 April 2002 and is greatly missed by all.
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Danielle, born 23 November 1992 had MPS I, Hurler
Syndrome. She passed away peacefully on 6 June 1998 with her
family and is sadly missed. Danielle loved to sit in her comfy chair watching her ABC
videos. She especially loved the Bananas in Pyjamas, Noddy and
Thomas. She loved being home with her family in Churchill, Victoria
and absolutely hated going to see doctors! |
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Cameron, born 6 July 1998, Hunter Syndrome.
Cameron loves music and videos. Some of his favourites are Grease, The
Pirate Movie, Xanadu and Blue Hawaii. Cameron also loves Hi-5, The Wiggles
and Dora The Explorer. Cameron attends Chalmers Road School at Strathfield 5
days a week. He enjoys swimming, walking, parties and riding on buses,
trains and horses. Cameron is seen in the first photo on a family holiday in
Mooloolaba and in the second photo with his 5 year old brother Daniel, who
is one of his biggest supporters. Cameron lives in Five Dock, NSW. |
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Jordan is 8
years old and suffers from Sanfilippo Syndrome. Jordy loves action
videos. He attends school and loves to be outside. Jordy loves
his dog - it is a staffy and takes all the love Jordy dishes out. Jordy
lives in Bacchus Marsh, Victoria. |
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Zac is 13
years old and suffers from Sanfilippo Syndrome. Zac has lost many of
his skills now including his speech but he still manages to make his voice
heard! With his brother Jordy, Zac attends a special school.
Life is hectic at home but he and brother Jordy's smiles and cuddles make it
all worth it. Zac lives in Bacchus Marsh, Victoria. |
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Chloe
was born on 4 November 2000 and suffers from Hurler-Scheie Syndrome. Chloe
enjoys going to preschool 3 days a week and playing with her 3 year old
brother. She is a very happy go lucky little girl, nothing gets her down,
she always has a smile on her face. She is looking forward to going to
school in 2006 with her 2 older sisters. Chloe lives in Morayfield
Queensland. |
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I
am very happy to be able to get in touch with your society... because in
this way I realise there are other cases like mine in different parts of
the world who share the same experiences. I have two boys - Jakeline (16 years old) and Valtercie (15 years old), MPS sufferers with
Morquio Syndrome and another yet undefined. Both are wonderful
boys, united and loving and also much loved in the community where we live
in Goiania Brazil. |
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Edwin
was born on October 28, 1996 Hunters Syndrome. Edwin
likes to see SpongeBob he also likes to Play Gamecube his favorite Game is
Sonic DX and Sonic Shuffle. Edwin is really loved by all who see him, he is
really friendly. Edwin lives in Pomona California with his family. We all
love Edwin ...Very Much. |
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Aaron was born on 8th July 1993. He has
Sanfilippo A, Aaron loves watching Barney and looking at books and
photographs. He has a gastrostomy but sometimes eats puree foods. He no
longer talks but laughs so loud at times. His big blue eyes dance when
people talk to him and his smile breaks everyone's hearts. Aaron is a gift
and has taught us so many things over the years especially love. Aaron lives
in United Kingdom with his two brothers Ryan 10 and Liam 4 and of course us,
mom and dad. Aaron is a very special young man. |
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Jacob is 13 years old
he has Sanfilippo type A. He was born January 18, 1994. He loves movies and
eating also being around his family. Jacob is now in a wheel chair but still
a very happy boy. We love him so much. He lives in the little town of Big
Sandy TN. Here are two pictures of him and we hope one day for a cure. |
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Please email your photos and caption to
be added to our gallery to
webmaster@mpssociety.org.au or mail them to the
national office. |
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