#saveourmax

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#saveourmax

#saveourmax

@WhlrM

#saveourmax This account is dedicated to my darling nephew,Max, who has Batten disease.

Bristol, England Katılım Nisan 2019
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#saveourmax retweetledi
Nicole Rich
Nicole Rich@njrchfoundation·
💗⭐️IT’S RARE DISEASE DAY!⭐️💗An easy way to support today is sharing tweets/posts you see from the Rare Disease community.To find out more pls watch & share!👉🏼 facebook.com/15156055863069… thank you! Now let’s celebrate all of the amazing children who inspire us everyday!
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Simon Sewart
Simon Sewart@simonsewart·
Conductive Education Bristol is an amazing tiny charity that support children like Max, who has #battendisease, with gross & fine motor support, giving self-esteem & confidence. More than ever, these tiny charities need our support. Please do take a look cebristol.com.
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Mel Hall 💙
Mel Hall 💙@melhall10·
We may be a very small community but my word we have an exceptionally loud voice. Thank you to those who have shared & liked posts. It really does mean the world to us families seeing so many supporting International Batten Disease Awareness day #battenday2020 #BattenDisease 🧡
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#saveourmax
#saveourmax@WhlrM·
@shareastar A massive thank you, Jessica and Felicity! Max and Felix were very pleased with their stars and presents ❤️ You are amazing and what you do for these children is just extraordinary ❤️
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Share a Star
Share a Star@shareastar·
Our youngest helper! We were just finishing off the last star before Christmas. It was for our Max Star. Max suffers with battens disease and is very poorly. Felicity wanted to help! #ShareAStar #Christmas
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#saveourmax retweetledi
Nicole Rich
Nicole Rich@njrchfoundation·
We were thrilled to see you yesterday & even more delighted to see that smile from your brave boy💙after everything he has been through. So glad everything went well & you are home together.Great to see you Max, look forward to seeing you again soon xxx
Simon Sewart@simonsewart

Due to complications, Max hasn’t had #brineura for 2 months but he restarted this week at @GreatOrmondSt. He’s never stopped smiling and joking through it all, he’s inspirational. Here he is waiting for his infusion. Well done Max! #BattenDisease

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#saveourmax retweetledi
Simon Sewart
Simon Sewart@simonsewart·
Due to complications, Max hasn’t had #brineura for 2 months but he restarted this week at @GreatOrmondSt. He’s never stopped smiling and joking through it all, he’s inspirational. Here he is waiting for his infusion. Well done Max! #BattenDisease
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#saveourmax
#saveourmax@WhlrM·
The marvellous #SaveOurMax community has been our inspiration behind a very special Christmas fundraiser for Max. Please join us in making this Christmas the best it can be for darling Max and his family ❤️ crowdfunder.co.uk/maxs-christmas
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Simon Sewart
Simon Sewart@simonsewart·
Not sure hospital is meant to be this much fun! Max and Felix enjoying spending time together. Max will be here for another 2 weeks at least. The staff at @ErasmusMC are just amazing as have been the people of #Rotterdam. Dank u wel a million times. #brineura #battendisease
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Simon Sewart
Simon Sewart@simonsewart·
Max has bacteria in his cerebral fluid and so is on antibiotics. Once cleared, hopefully next week, he can have a new port inserted so that he can restart #brineura 2 weeks after that. Amazing to see Max smiling again. And he finally got some chocolate cake in the hospital!
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#saveourmax
#saveourmax@WhlrM·
@simonsewart Speedy recovery, sweetest darling Max❤️ You are doing so well!! Not long till your next dose of #brineura and transfer to @GreatOrmondSt Cannot wait to have you back!! Lots of love 💕❤️🎈
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#saveourmax
#saveourmax@WhlrM·
@simonsewart @Jacob_Rees_Mogg @NICEComms @NHSEngland Thinking of darling Max and you all and praying for a speedy recovery❤️ He's waited so long for this treatment and overcome so many obstacles. This one is one of the biggest challenges yet, wishing him all the strength in the world to fight. With you all the way 💕❤️
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#saveourmax retweetledi
Philip Palermo
Philip Palermo@Philip_Palermo·
Posting my wife’s update on our daughter Amelia for those who follow along here. Treatments and cures can’t come soon enough. #battendisease #cln1
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Philip Palermo
Philip Palermo@Philip_Palermo·
We decided to start a T-shirt/hoodie campaign for our wonderful Amelia, who’s battling CLN1 (Batten disease). If you’d like to help, click the link before Nov. 9. Thanks and love to you all! #battendisease #cln1 customink.com/fundraising/te…
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Simon Sewart
Simon Sewart@simonsewart·
This is fabtastic, and great that Connie’s mum, Caroline, was able to directly tell @MattHancock that the current system for #raredisease drug commissioning is heartless and leaves children dead and dying. Loads of love to Connie X
Matt Hancock@MattHancock

Great to catch up with the brilliant @StuartAndrew and meet Caroline and her daughter Connie in Pudsey today, whose life is being transformed by our approval of Brineura to treat her Batten Disease

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Keşfet

@BattenDiseaseuk @GreatOrmondSt @NICEComms @MattHancock @shareastar @seema_martin @simonsewart @ErasmusMC