SallyM

@ukhuntersmum

My youngest son was diagnosed with MPS II (Hunter Syndrome) in 2015. This is our journey.

Yorkshire and The Humber
hunterslife.co.uk
Joined April 2016
33 Photos and videos Photos and videos

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  1. 5 hours ago

    Can't be there myself, but I'll be following on Twitter!

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  2. 21 hours ago

    Pudding got another ride in the car yesterday. He didn't actually push another kid out the way to get to it, but close...!

    1 retweet 2 likes
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  3. Apr 3

    Just finished reading Shtum by . I cried. I also cried in public on the train yesterday when with Pudding. Very raw, honest account of what parents have to go through during . Shouldn't have to be this way.

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  4. Apr 3

    No prizes for guessing where we are again today!

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  5. Apr 2

    Any ladies out there want to express an opinion?

    here's one to help settle the discussion... should mammography have male mammographers.... (think of the patients and not about the equality aspect)
    Show this thread
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  6. Retweeted
    Apr 2

    Have you ever been given unwanted advice? This is my response:

    1 retweet 1 like
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  7. Apr 2

    This is a really important area, I think. Pudding's mainstream school were great at teaching his year-group some so they could communicate better with him. But it would be amazing to have it more widespread.

    Without I could not communicate with my son. It is our lifeline. Please consider signing this if you live in the UK. Petition: Make Makaton a compulsory part of Early Years and Primary Education in the UK.
    1 like
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  8. Apr 2

    We've just had a few days away at Grandma's and my new favourite thing in the world is this bed! We got it a few months ago from another MPS family but this has been our first chance to use it. T thought it was...

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  9. Apr 1

    The joys of . Yesterday T was up at 6.30 and Pudding slept till 8am. Today they swapped times. Why can't they both sleep in on the same day?

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  10. Mar 31

    This is lovely

    "Suddenly Ethan looked down and could see ‘Lola’ laying across the iPad and on his lap. I was on high alert as Ethan could have easily presumed the dog was a teddy and tried to throw her." 🐶
    1 reply 1 like
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  11. Mar 31

    This is so well put - children need to feel supported and listened to, particularly in a hospital which is so alien and scary.

    Sophie Lyons describes what it’s like to be a frightened child patient, and explains why being called “brave” doesn’t help
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  12. Retweeted
    Mar 29

    The great has ran a campaign for supermarkets to stock large nappies / pads. Now a survey is out asking for information from potential users before the release of a new size product to help families with disabled loved ones.

    1 reply 6 retweets 5 likes
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  13. Mar 29

    It shouldn't have to be this way...

    As The Ministry of Truth announces shiny new funding for the NHS, in the wings the bullies are forcing NHS Trusts to make billions of “efficiency savings” [CUTS]
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  14. Retweeted
    Mar 28

    Currently at the most magical place on the planet and there’s not a single restroom / toilet my disabled son can use. And do they care? NOPE.

    13 replies 29 retweets 27 likes
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  15. Mar 28

    Please RT and fill in to help inform this new product.

    BIGGER NAPPY PETITION UPDATE! Product Launch Ahead - Your Help Is Needed! via Please RT & complete this survey So excited! Thanks for your help x
    1 reply 1 retweet 2 likes
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  16. Retweeted
    Mar 28

    Parents / young people / forums etc - please take a moment to fill in this survey so can map the extent of health and social care across the country

    SURVEY ALERT: please complete our very short survey about what is happening to health and social care services for disabled children in your area. And please re-tweet.
    2 replies 36 retweets 24 likes
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  17. Mar 28

    My sunshine...

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  18. Retweeted
    Mar 28

    Fantastic to see my story on disabled people forced into care homes shared widely - and especially by non-disabled people who had no idea this happened. Non-disabled anti-cuts campaigners - please join the fight.

    7 replies 106 retweets 103 likes
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  19. Mar 27

    World Down Syndrome Day reminded me to celebrate the joy...

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  20. Mar 27

    It's a shocking read - and should be mandatory for anyone who thinks that is a good idea.

    & I feature in this article about disabled people being warehoused & how we’re fighting to remain in our homes. I’m not immune to the cuts & pressures of being forced into residential care - no one is. Thanks .
    1 retweet 3 likes
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