#saveourmax

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

[Nicole Rich @njrchfoundation]

💗⭐️IT’S RARE DISEASE DAY!⭐️💗An easy way to support today is sharing tweets/posts you see from the Rare Disease https://t.co/BG3KE3bPap find out more pls watch & share!👉🏼 https://t.co/kCpGyLUk2S thank you! Now let’s celebrate all of the amazing children who inspire us everyday!

[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 https://t.co/Piheu9tbVK.

[#saveourmax @WhlrM]

Thinking of all the special families today💕 You are amazing 💛#RareDiseaseDay2021 #RareDiseaseDay #battendiseaseawareness @BattenDiseaseuk

[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 🧡

[Simon Sewart @simonsewart]

Max is now happily getting brineura at the amazing @GreatOrmondSt every 2 weeks. But let’s not forget that the @NICEComms #RareDisease commissioning process means that only Poland gives less access to treatment than the Uk. We need an urgent change @MattHancock! #RareDiseaseDay

[#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 ❤️

[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

[Nicole Rich @njrchfoundation]

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

[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

[#saveourmax @WhlrM]

👏Look who is on their way home!!! 🎉😍🎄☃️⭐🦹‍♂️
#superstar
#brineura
https://t.co/7mwS2o4agX

[#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 ❤️ https://t.co/7mwS2o4agX

[#saveourmax @WhlrM]

@seema_martin @simonsewart @ErasmusMC That's just fantastic!! 👏So wonderful to see the beautiful smiles!! 😍❤️

[Kate Learoyd @PKUFamily]

Today I visited #BioMarin with Prof. Macdonald and Caroline Graham to discuss access to #pku drugs. It was a constructive meeting but frustrating that we are still engaged in appraisal processes after all this time. #kuvan11yearswaiting #pegvaliase @macdonj @NSPKU

[#saveourmax @WhlrM]

So pleased darling Max is getting stronger and fighting off the infection ❤️ #fighter #reunited #brineura #amazingnephew

[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!

[#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 💕❤️🎈

[#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 💕❤️

[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

[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

https://t.co/bMX1PBSqu1

[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