Top Tweets for #saveourmax
This photo makes us so happy💗It was a very special day y’day @GreatOrmondSt when we were together with @FightForRGrace & @WhlrM as our brave little warriors had their infusions💗It made our day seeing Max here at last from Holland @BattenDiseaseuk 💙#hospitalfamily #saveourmax
Max has now had 2 infusions of #Brineura at @ErasmusMC. Here he is having his first. Whenever a nurse asks Max if he needs anything, his answer is always "chocolate cake" but he's still not been given any! It's not good enough is it Max?
Thank you for helping us to #SaveOurMax.
Forced to leave this uncaring country which brushes aside dying children who could be saved.I pity those who could bring change @NICEComms @NHSEngland @DHSCgovuk @MattHancock @cj_dinenage for their lack of honesty, love&compassion.I weep for you & Max #saveourmax #battendisease
Max and Felix obviously understand there is no greater team on the planet than @BristolCity but @Feyenoord aren’t a bad 2nd team.
Their stadium is just 500m from their new #Rotterdam residence near #Feyenoord and #noordereiland.
#fightingfortheirlives
#saveourmax
#battendisease
Max and Felix obviously understand there is no greater team on the planet than @BristolCity but @Feyenoord aren’t a bad 2nd team.
Their stadium is just 500m from their new #Rotterdam residence near #Feyenoord and #noordereiland.
#fightingfortheirlives
#saveourmax
#battendisease
You didn’t deny funding, all you did was dish out a death sentence. This isn’t a failure of politics, this is a failure of what it should mean to be human. #saveourmax #battendisease @MattHancock @BorisJohnson @CatMcKinnell @cj_dinenage @NICEComms @NHSEngland
Somerset and Chew Valley showing their wonderful community spirit and caring nature yet again. Supporting Max and his family in their fight to get treatment for #BattenDisease. Thanks due once again to local MP @Jacob_Rees_Mogg @ChewGazette #SaveOurMax
https://t.co/JN719PrZsa
#somerset resident #saveourmax needs treatment for Batten disease. No treatment in England, despite the hard work of our MP @Jacob_Rees_Mogg. Brineura can give him a childhood. Have a heart @MattHancock. £350m brexit NHS dividend @BorisJohnson?
https://t.co/6ZlUbRrrQP
Even a 4 year old (another future leader) understands that something isn’t right.
Deliver the medicine to children who desperately need it. Another Friday coming up with no news...#battendisease
@NICEcomms @NHSEngland @cj_dinenage @BorisJohnson
@simonsewart @NHSEngland @NICEComms Loved by all your family so much it hurts. You had the misfortune to be born in the only country which does not wholeheartedly care for children-England. Particularly @NICEComms @DHSCgovuk @NHSEngland @MattHancock @cj_dinenage #saveourmax from #battendisease
Please please please provide the drug max needs now #saveourMax @MattHancock - you have the power and ultimate reaponsibilty - use it! Don’t leave Max or children with #battendiaease without treatment any longer
@MattHancock I love @NHSEngland G'daughter Issie saved by @GreatOrmondSt in May 2019. BUT BUT BUT Max #saveourmax with #BattenDisease left to DIE refused treatment by @NICEComms You have the legal powers @MattHancock to SAVE HIS LIFE. Not there for everyone!!!!!! #fightingfortheirlives
@MattHancock I love @NHSEngland G'daughter Issie saved by @GreatOrmondSt in May 2019. BUT BUT BUT Max #saveourmax with #BattenDisease left to DIE refused treatment by @NICEComms You have the legal powers @MattHancock to SAVE HIS LIFE. Not there for everyone!!!!!! #fightingfortheirlives
It really is that simple.
BioMarin need to try & recover their costs. @NHSEngland should be trying to keep the nation healthy without discrimination.
Wish the negotiations were run by this 4 year old - thank you little one.
@MattHancock
#fightingfortheirlives.
#saveourmax
Even a 4 year old (another future leader) understands that something isn’t right.
Deliver the medicine to children who desperately need it. Another Friday coming up with no news...#battendisease
@NICEcomms @NHSEngland @cj_dinenage @BorisJohnson
Brilliant news. A thinking caring health care professional is just what the conservative party needs to educate @NICEComms in medical ethics, care and compassion. #fightingfortheirlives #battendisease #saveourmax
👏 Congratulations to Dr Caroline Johnson @drcarolinej, who has been appointed Vice Chairman of the Conservative Party 🔵🌳🇬🇧
Congratulations @drcarolinej.
You have great support in the #battendisease community and touched us with your intervention on the Commons debate.
Best wishes from us all.
#fightingfortheirlives
#saveourmax
Honoured & delighted to be appointed Vice Chairman of the Conservative Party by Prime Minister @BorisJohnson
Looking forward to working with @JamesCleverly @Helen_Whately @paulscullymp @AndrewBowieMP @DavidEvennett @HelenGrantMP @ranil @AlecShelbrooke
#winningteam #Conservatives
@lizrich21 @MattHancock @NHSEngland @NICEComms @njrchfoundation @FightForRGrace @simonsewart Make that £2.1Bn into £2.106Bn and we could save quite a few children with #battendisease from an horrific and certain death @BorisJohnson @MattHancock @NHSEngland @NICEComms Oh, silly me. What a waste of £6million. #fightingfortheirlives #saveourmax
.@NICEComms it’s true that caring duties place an emotional and financial strain on carers. How come you ignore those costs in QALY calculations for new treatments? You act like carers don’t exist at all then #orkambiNow #kuvan10yearswaiting #saveourMax @strawfie
Unpaid carers need more support to cope with financial and emotional stress. Find out what else we recommend in our new draft guidance on adult carers here: https://t.co/EUStNTSr8L
The mandarins talk & talk. "We will update you on progress in due course". Complacent @NHSEngland @NICEComms ? Worse. Malicious unethical neglect. How dare you treat children so viciously #fightingfortheirlives #saveourmax
@blakeydark Failure to treat kids with #battendisease while mandarins talk "We will update you on progress in due course" is maleficent. #saveourmax Sewart is visibly dying. Unless @NHSEngland & @NICEComms enjoy destroying children they should TREAT NOW. Don't be so damned complacent.
A new month, a new donation!
This months donation is going to Save Our Max. NICE is refusing to fund the only treatment because of cost.
Below is a link to a Crowdfunder appeal. Charity begins at home❤️ #saveourmax #battendisease #donate
https://t.co/O0a0sDQRJ8
The U.K. doesn’t spend money on treating people with genetic diseases. They can suffer or die. Doesn’t fit @NICEComms cost QALYs. This way of thinking goes right back, to very dark places indeed. #saveourmax #orkambinow #kuvan10yearswaiting
@MattHancock Look up the meaning of compassion care altruism "Rule of Rescue" before you play with such words while kids with #battendisease die untreated. @NHSEngland managers who play bargaining games with kids lives are MONSTERS. You are ultimately responsible - do something #saveourmax
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