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11/1/2017 0 Comments

Sumner Weds

Today dad's going explain a few fings 👳
We finally have had an appointment offered for Sumner to go up to the Harley Street Clinic in London 🤕 
This Friday 13th 🤕
At the moment we haven't quite got enough £££ that we're aware of to go for the CED trial on compassionate grounds 😢
We're also aware of all the hard work going on around the country & abroad 😍Thank you 😍
The cost of the CED trial has increased somewhat due to its relocation from Bristol to London 🤕 good in some ways but not financially 🤕
The cost of the first part is around £80,000 that's to have an operation to fit a semi permanent port in Sumner's head by computer guided robot 🤕 which all future infusions will go through 🤕 
There lies the extra costs because once on the trial to help prolong Sumners life 🙄 he will need monthly infusions which can take 8 hours or so to be injected 😢thus needing a High Dependency Unit Bed 🤕 in London £££ 🤕 
Back in Sept we were led to believe infusions would cost around £2,500 🤕doable with all you kind people's help & support 😍 then £4000 is bantered about 🤕 Then just before Christmas £6000 😢 recently we read that it could be as high as £8000 😢 let's hope not 🤕 hey or we may as well give up now 😢 
I know that some of you will be reading this thinking 🤕😔😢🙄 ? Stfu 
We will hopefully get a much better idea of costs on Friday 🤕 
Clearly they think that the CED Treatment is shrinking DIPG tumors in some cases & helps to prolong life & reduce symptoms in others 🙄 however once on the trial we will have to find between £6 & £8K per month 😢 to continue 🤕 unless of course Sumner doesn't respond or deteriotes or isn't fit enough to stay or even be on the trial 🙄
Please please keep sharing & fundraising 😍 coz this is getting worrying 😢 
Some people have asked if we were a charity that they could donate 🙄 Luckily there's a charity that can accept donations for Sumner on our behalf 🤕 & will ring-fence it specifically for Sumner's trial 🤕 phew 😢 
So please if any of you know of any such companies or individuals that would like to donate via a charity please PM me Camron 👳
We've already had 2 donations applied in this way by the Horley Lions & an employee from legal & general 😍 Thank you 🤕
Anyhows usually busy day for the Malik's 
School 🙄
Squash 😍
Sustenance ❤
Sleep 😴
So please everyone don't think that you're involvement or donation is not worth while 😢 
Because without you all in one way or another 😍 we'd be stuffed 😢 
So if you need to ask anything or need to know how best to help please do ask, call or pm me 🙄 enjoy pics sorry for preach 😢
Sleep tight everyone 😴😴😴
Night night x ❤ x
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