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Thread: mps type 3/sanfilippo syndrome

  1. #1

    Default mps type 3/sanfilippo syndrome

    just wondering if anyone has a kid with sanfilippo syndrome my dd and ds3 have just been dignosed with it and off to the childrens hospital on wednesday to see the metabloic professor for more test's but just want to have a chat with others that are going thru the same thing cause after googling alot im left scared and have spent alot of the weekend in tears

  2. #2

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    No experience sorry hun, but just wanted to send you big hugs. I'm sure the hospital will be able to hook you up with support groups/other families. xoxo

  3. #3

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    I'd never heard of it before but I can't imagine what you're going through. Maybe get in touch with the hospital as pp said and see about support groups. Try asking google to see if there's a foundation or charity with a support group going or where you can get some more help/information? hugs

  4. #4

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    thanks girls i will askon wednesday about support groups
    i had never heard of it either but after reading its upset me so much it was saying kids have a life span of late teens/mid 20's i dont want to lose my babies

  5. #5

    Join Date
    Oct 2007
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    Middle Victoria
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    There is heaps of research going on into metabolic conditions, and your babies will see the benefits of the research in their lives. Good luck for Wednesday. Take pen and paper so you can write down notes, and a list of any questions you have.

    take care

  6. #6

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    How did you go today hun? Big hugs xoxoxo

  7. #7

    Join Date
    Dec 2008
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    Brisbane, QLD
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    Oh hun, I'm so sorry you and your babies are going through this.

    A hug seems so insignificant but it's all I have. Please know I'm thinking of you.

  8. #8

    Join Date
    Feb 2011
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    Sydney
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    Hi Mum-of-5,

    I'm so sorry that you and your gorgeous babies have to go through this
    I really dont have any personal experience with MPS III, but I'm doing my last year of a Biomedical Science Degree.... I think I heard MPS III research mentioned last year in metabolic diseases (talking about novel therapies etc). I'm pretty sure that they are beginning a gene therapy trial for MPSIII type A soon (next year or so) but I think it is in France. Still, maybe this is something that you could look into, and if nothing else I hope it gives you some more hope.

    Again, I cant give you and you babies enough

  9. #9

    Red face Sanfilippo Syndrome

    Quote Originally Posted by mum_of_5 View Post
    just wondering if anyone has a kid with sanfilippo syndrome my dd and ds3 have just been dignosed with it and off to the childrens hospital on wednesday to see the metabloic professor for more test's but just want to have a chat with others that are going thru the same thing cause after googling alot im left scared and have spent alot of the weekend in tears
    Dear Mum of 5,

    I am so sorry to hear of the diagnosis..I am in the US, Long Island New York, and I have a daughter who is turning 7 on February 18th who has Sanfilippo Type A. She has a Facebook page that will give you a bunch of information. There is a huge support network for Sanfilippo and other MPS illnesses that I can get you in touch with, and I have Australian contacts as well. I'm sorry, I don't understand the dd, ds, or ds3 references. I would be more than happy to talk to you...would love it as a matter of fact! Please, if you're on FB, find me Danielle Griggs-OConnor, or Emily's page "Emily's Dance, our baby's life with Sanfilippo Syndrome" This is not something you can handle alone! Many hugs and kisses to you!!! My email is [email protected]

    xoxo Danielle

  10. #10

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    Hi Mum-of-5, just checking how you're doing? hope you and your family have lots of love and support around you right now. Hope the appointment with the metabolic prof gave you some more information

  11. #11

    Join Date
    Oct 2007
    Location
    Middle Victoria
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