Well, here I go. Into the unknown, for my boy.
His Dexcom is an ongoing cost as you know. But, after reading some of the stories on the just giving site, I don’t even think we should qualify to do this?
So many children suffering all over the world
BUT, I do donate when and where I can when people share these pages and I am VERY aware of the kindness and generosity of people and just how powerful that is. So, as Carters Dex is a constant cost, I’m taking a leap of faith – into the unknown, hoping you will help me even if it’s just by sharing so people who can & will help, will see it.
My boy deserves this! I’ve thought a lot about it recently, as the sensor costs started kicking in and I have to work tirelessly to get ‘just 1 more day’ out of them; the NHS should provide it for him and all children, especially those who sacrifice so much to maintain their health OR at least subsidise it in some way.
Please, help where you can, if you can.
That was my Facebook status this morning. BEFORE 4 incredible people made a donation for my son and so far we have raised £80 towards the 50% (£2000) end total he will need by Christmas (£4000)! WOW WOW WOW!!!!!
When I took this photo (this morning) we were at £20. I am blown away by how generous people are and that in 1 day we have raised enough to buy 1 sensor – all out of the kindness of people’s hearts!
Before my extremely generous friend and her team supported us with funding Carters Dexcom (in December), I had planned to carry out some form of fundraising towards #cartersdex because alone (on a students nurse bursary), it seemed impossible. Well, actually NOT impossible, but a good 12 months I thought.
I am pretty handy with a sewing machine and at crocheting. I have recently lost a bit of weight meaning I have an entire wardrobe of clothes to sort through and I planned to bake and host a bit of a ‘fund-raising’ day.
I was going to liaise with school to see if we could arrange a ‘Type Onesie Day’ and all the kids could come in onesies, learn a little bit about diabetes to benefit them, the school and Carter and then host a raffle or sell some bits and bobs in a bid to raise some funds.
I also had plans to get the JRDF on board if that’s something they do, maybe split the profits with them if they required; to get a bit of support and guidance.
I am a very little fish (a tiny little neon tetra) in a massive ocean! I’ve never done anything like this before, not much of an idea where to start. The help, any help would have been welcomed.
I had mentioned on my Facebook page that once Christmas is over I was going to start fundraising for #CartersDex. A few of my friends suggested setting up a ‘just giving’ page but I’d never heard of crowd funding before. I read over it and learnt what it was. The concept is brilliant . But I wasn’t sure if it was for me. It felt a bit like modern, social media begging. Like I was standing in front of my friends with a charity tin expecting them to open up their wallets and just give me their hard earned cash. I didn’t feel comfortable with that, so I decided against it. (I’d like to note that I do totally get the concept and do give to these causes though and I didn’t realise how much that accumulated to until recently; when I logged on and it brought up a list of my donations, I was quite proud of myself). I believe you should give where you can (even more so now). You never know when it’s you who will need peoples help and I don’t think you have a right to ask for help if you’re unwilling to help others when they need it.
So, I shelved the just giving page, and after Christmas I was going to start some live fundraising, see if the local shops/supermarkets would help etc…
I believe that TESCO’s current chosen charity is Diabetes UK, so I was going to start there AND at a local JDRF event we’d been to, someone spoke about fundraising and she had liaised with her local ASDA who were also very helpful. I didn’t mind what it took. I would do it – to help Carter.
I had already been in touch with Dexcom UK and had a current price guide. I knew I was looking at £1000 outlay and then I needed to buy other accessories too. Maybe a month or so’s supply of sensors to start with? Taking me closer to £1500. I could then buy sensors as and when I needed them. To buy enough for 12 months outright, I was looking at a figure closer to £4000! That’s more than my NHS bursary for 12 months, that I use to live on (pauper student – seriously – slave labour). So, I’d have to buy sensors as and when he needed them and just start with the basics of what we need.
BUT, I was very blessed that I didn’t need to do any of this! Literally, the day after I’d mentioned the Dexcom and Fundraising, my friend (as I wrote in the Dexcom Blog) and her Team made a donation directly to us, that combined with what I had already saved (and some of our xmas savings too) was enough to get us started. It was the biggest gift anyone had given us! I was speechless – I’m still in complete awe and eternally grateful!
I was able to order Carters Dexcom and he’s been using it since the 2nd January. It changed our lives!
So far it has been extremely reliable – amazing! But, it comes at a cost. I am finding my worries have slid and now I worry about not being able to upkeep the Dexcom when the time comes.
The sensors are £53 each (they are designed to last 1 week), we sometimes get up to 4 weeks per sensor, lately I have got 2.
The Transmitter and Receiver are a lot more expensive and will require replacing around October-December. I need to have a plan in place to achieve this. We cannot go back to a life without the Dexcom now, it would be like chopping my arms off. Removing my eyes. It would make life impossible. Frightening. We could do it – we can do anything, but I don’t want to go back to that fear and that unknown. I don’t want that for Carter. He deserves better!
So, I decided to not only pick up extra shifts at work where I can (around my studies and looking after Carter and being a mum to Morgan too). That I’d go back to my friends original suggestion of the Just giving Page.
A LOT of people (back before xmas) had said they would like to help us and make a donation and I should set up a page. So I decided to take a leap of faith and do it. I hope they see it 🙂
It’s not for everyone and I don’t take it for granted. AND I still fully intend to make some crochet items and do my own part to fundraise too. I will wash cars and pack bags in the supermarket if I have to.
Diabetes is such an expensive disease and EVERYTHING you need is also super expensive. The NHS cover testing meters, test strips, syringes and insulin. Everything else is self-funded because it isn’t classed as life sustaining. It is though, I don’t buy anything that Carter doesn’t NEED. The items are not luxury, like Tampons, a luxury item – seriously? Nope – and neither is his Dexcom. The NHS fund it for a selective few, some that I feel the needs are questionable when compared to my son’s needs too but thinking like that makes me bitter and I am not that person. If you can get it – you would. I am not knocking them at all!
I have copied the page from my Just Giving page for you to have a read and please, if you can help us, just click this link and make a donation: https://www.justgiving.com/crowdfunding/CartersDex
ALSO; If you can help us by spreading awareness and sharing our story then please do that too. Any small help is MASSIVELY appreciated!
Direct from my JustGiving Page:
Diabetes is an incredibly demanding, difficult, & dangerous disease. To keep Carter safe, we fund a piece of equipment called the Dexcom. It is injected into his skin which allows me to keep a constant watch on his blood sugars so I can prevent any dangerous hypoglycaemic episodes like seizures, a coma or even death.
The Dexcom is not funded on the NHS unless the patient has extremely poor control of their Diabetes and requires much hospitalisation.
Carter works very hard to control his diabetes to maintain his health and avoid nasty complications, therefore this works against him in terms of the Dexcom, yet his needs are no less.
It’s currently 5am and I am still awake, watching him sleep, checking him to make sure tonight isn’t the night that diabetes will steal him from me. Dead in Bed syndrome is very prevalent amongst the T1 Diabetic population and I will do everything I can to prevent that for him.
The Dexcom provides a further element of safety regarding his control and will alarm me when he is heading towards trouble.
I wrote a blog about it that will give you further information & our full story: https://howwelivenowsite.wordpress.com/2017/03
The Dexcom also gives him the independence to go to school and be a normal member of society – everyone deserves that.
However, the costs are high. It cost £1000 in December and will require an additional £1000 this coming December. In addition to that, there is an additional £53 a week to replace sensors and £20 a month for adhesives.
Annually this equates to almost £4000 and I am dreading NOT being able to maintain it. I don’t know how I will be able to take it away from him, to take his independence and his safety net away.
Therefore (as I am fully aware & in awe at the power & generosity of people. And on recommendations from friends), I am shamefully and sincerely asking for your help.
If you can help, you have absolutely no idea what this will mean to us & just how grateful we will be ❤
It pretty much covers it.
So, I’m asking you the same thing: If YOU can help us I will be forever grateful, or if you know someone who can, please share my link.
Likewise if you know someone struggling with their Diabetes or has been recently diagnosed/has a recently diagnosed child then PLEASE send them my way. I have been there where they are, I know exactly what it feels like and the journey they are on – I can help. I want to help!
ALSO: If you are a local business able & willing to provide raffle prizes or incentives for my fundraising attempts; please let me know. OR, if you are a local fundraiser and have any support or advice you are able to offer then please, get in touch. We could even work together and find a solution for both parties.
We will be forever grateful to the generosity and kindness that come from the power of the people!
Find your Happy – in every day – life is far too short! Find the Rainbows 🙂
Rose ❤ xx