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..
Jayda was born on 8th November 2006 and has MPS III. Jayda
was diagnosed when she was 3 months old. Jayda loves watching the wiggles and
knows most of the words to their songs. Jayda also likes to play outside and
loves to eat! Jayda attends daycare twice a week and enjoys it once she's there.
She also now has a little sister (unaffected) whom she adores.
Jordan was born March 2nd 1995, he was diagnosed with MPS III just before he turned 2. He is the 4th child in his family and he has 3 older brothers including Zac who also has MPS III. Jordan has a nephew named Noah whom he adores - they have a great connection. He attends Echuca Special School. Jordan is a very happy boy, he loves swimming, walking around, bike riding, and his dog. He sleeps with the help of Melatonin, he doesn't talk much most of his words are gone, but he does say, Mum, Money, Donalds (McDonalds). His family just hope he stays happy..
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..
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..
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 who loved him..
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..
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 and can still take part in some activities although he is now mostly confined to his wheelchair. Tom enjoys his food, some 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.
Zac was born 24th April 1990, he was diagnosed with MPS III just before he turned 3yrs old. He is the 2nd child in his family and he has an older brother and 2 younger brothers. His brother Jordy is also affected. Zac attends an adult Centre which he just loves and this year he has been on a steam train, gone to the snow, fishing in a boat, camel riding, and camping. Zac is very happy to be out of the school structure. He doesn't talk words anymore, he walks all day and night till he drops off to sleep, he is happy and has a very weird sense of humour - he laughs at other peoples mishaps! He has a nephew whom he communicates with and they get into trouble together - Noah is only 2 years old..