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Merry Christmas, Everyone

Merry Christmas Everyone!

Thanks so much for your support throughout this amazing year. I can’t quite believe all that has happened, despite the tragedies we have suffered as a family. 

It started with me writing the foreword to the Difficult Conversations booklet for Together for Short Lives, then my story used as a case study for Together for Short Lives’ Helping Children Who Need Palliative Care To Access Education resource. Molly and I were in Dogs Monthly representing Dog A.I.D. in February. In March I became the first Global Youth Ambassador for the International Children’s Palliative Care Network, appearing in the Echo, Southend Standard and the ehospice website, and wrote a blog post for the Courageous Parents Network. I also appeared in National Voices and Think Local Act Personal’s My Life, My Support, My Choice document.  And finally, I appeared in the Transition Information Network’s My Future Choices magazine, then did some filming with Locomotive Media, and then came in the top three of Include Me TOO’s Community Inspiration Awards “Inspirational Young Person” Category. 

In April I did some filming with Professor Julia Downing for ICPCN, which was later shown at the World Health Assembly and the Asia Pacific Hospice Conference, and my blog appeared on the ehospice website for the ICPCN’s NOW Campaign. Also in April, my Council for Disabled Children SEND reforms video was played at the Together for Short Lives Living Matters Conference, and I wrote the foreword to a booklet on transition for Together for Short Lives. In May my blog reached 100,000 views. Also in May, my Dying Matters blog post was republished on the ehospice website. 

On the 7th July I was announced as one of the Health Service Journal’s 50 Patient Leaders, for people changing and shaping healthcare, in partnership with NHS England. What an honour that was, especially at a really difficult time. 

In August I started fundraising for a new wheelchair, the Permobil F5 Corpus VS (minus the standing feature) to enable me to spend more time out of bed, training and walking Molly, attending charity events, going out with family and friends and more. I had to raise £22,500 to pay for the chair, and I had raised this total in October 2015. The chair has made a huge difference to me, more than I could ever have imagined. I have got back to charity work, filming, gone to events (including very prestigious ones), given speeches, written pieces and Molly’s training has come on leaps and bounds, her assistance work is going amazingly, we’ve gone back to dog classes and started agility lessons – Molly is thriving and we love agility, I do hope to compete one day with her. Who says you can’t do “Agility on Wheels”? She’s really good at it, and it’s a great way to have fun, to work as a team and it’s actually improved her general obedience as she has to do down stays and let me go to the other end of a line of jumps, and she has to take verbal directions and work away from me; Molly doesn’t like to work away from me, so this has been a huge step forward, to have her driving down a line of jumps away from me, confidently, and listening to commands in the process, but also have me travelling alongside her down the line of jumps but this not to distract Molly and she still has to concentrate on the commands and going straight down the line of jumps. Assistance wise we should be ready to take our Level 2 of our training with Dog A.I.D. in the New Year, which will be amazing; then only Level 3 to go and she will be qualified! I’ve done more in the months I’ve had my chair than I had done in the last year put together. I am comfortable sitting up, supported properly, I can drive around with my legs elevated 90* in front of me to prevent blood pooling and a POTS collapse, I can lay myself down, raise my seat up so I am eye height with whoever I am talking to or to see over barriers, reach for things and so on, I can get my legs higher than the level of my head by tilting and reclining the chair together which can help get the blood (and thus oxygen) up to my brain, to prevent or relieve a collapse. I have hooks for my TPN rucksack and a drip pole built in. It’s simply perfect. I cannot thank all of you enough for donating, sharing and supporting me to get this wheelchair, you will see below just how much it has allowed me to do. I appeared on BBC Essex talking to Sadie Nine about the fundraising which was fantastic. I am so grateful to you all for your support. You’ve given me my life back. 

In September I did a blog for Scope’s End The Awkward campaign which can be read here. I also did a blog for Health Life Essex (here)

On the 9th October I spoke at the Pseudo Obstruction Research Trust (PORT, for whom I’m a Trustee) Patient Information Day on my journey with Chronic Intestinal Pseudo Obstruction and Intestinal Failure and on the transition period. It was a great day, despite living being ill for 8 years now I learnt so much and it was very interesting. I also got a great compliment from my consultant Professor Qasim Aziz, who’s been treating me for 5 1/2 years now. You can listen to my speech here.

In October I did a blog for Together for Short Lives’ Here For The 49,000 campaign which was highlighted on ehospice, you can read the blog here.

From 4th November to the 16th December I was filmed for a BBC 3 documentary on Digital Legacies, which will be out in February 2016 (online, as BBC 3 goes completely online soon). My relatively small part grew and grew, I had a fantastic (albeit exhausting) time filming and learnt so much; TV work is definitely something I want to do more of, so long as I can continue with my beloved charity, health and disability work.

On the 17th November I went back to Parliament with Together for Short Lives, my last time there was 2013 when I spoke (which was actually the first piece of charity work I ever did; and look how things have grown since then). It’s hard to believe just how much I’ve done since that speech in Parliament, and I have so many exciting opportunities to look forward to, and so many things to be proud of – it’s so important for me to feel I can contribute, to feel useful, for my life to mean something and for something to be better because of me, and it’s fantastic to know I am making a difference, however there’s always the drive to do more, make a bigger difference and to really make my mark on the world. The reception in Westminster this year was fantastic, on the topic of “Care Around The Clock” and I hope I contributed and helped to make a difference. I got to see a friend there, whose daughter has a life-limiting condition along with intestinal failure and epilepsy, who I last saw at an event in March 2014, and heard the moving speech by a parent, Lizzie Hornby, whose son William has Edwards Syndrome. It was a fantastic event and great to see the wonderful Together for Short Lives team again. 

In November I agreed to be the spokesperson for the Open University Sexuality Alliance and Together for Short Lives’ “Talking about sex, sexuality and relationships” guidance and for this on the 30th November I appeared on BBC Radio 1 Newsbeat and online talking about my own feelings and experiences, you can read the article and listen to my piece here

On the 1st December I co-chaired an event at the Department of Health with Jon Rouse for the Children’s Health and Wellbeing Partnership. It was an amazing day, to be co-chairing an event at such a prestigious place, in front of Health Minister Jane Ellison, and a huge honour. You can read my blog about the day on the government blog here

The next day I spoke at a fundraising event organised by the Chelsea Chambers Choir in aid of The Wingate Institute, the prestigious gut failure and neurogastroenterology research institute, whose director is my consultant, Professor Qasim Aziz. Prof Aziz asked me to speak there, which is a huge honour. You can read my speech here

On Thursday 10th December, I attended a clinic appointment with my neurogastroenterologist, Professor Aziz, and was excitedly asked by his research nurse to come straight back as she had something to ask me; would I be their Patient Liaison Officer for things like their Patient Steering Group and other patient related activities, so of course I accepted. What a huge honour!

And this blog, by Christmas Day, will have over 160,000 views – in just under 3 years! I can hardly believe it. It’s almost unbelievable. 

I end this year having experienced so many amazing things, achieved things I never would have dreamed of and succeeded to triumph despite the enormous tragedies that have occurred for us as a family. Life will never be the same, but I don’t say that in a wholly negative sense; I have grown in ways I never could’ve expected, risen to the challenge and fought for care packages and to remain at home, taken over the coordinating of my care, ordering supplies, organising and paying drivers to get me to the hospital and to events since October, liaising between professionals, done all my own finances without even knowing how initially and I have walked and trained Molly almost every day since June. I have been blessed to have done all that I have done, to have the support that I do, to have achieved many goals and supported others on a personal level too. It’s hard to believe two and a half years ago that I’d not done anything, never would’ve dreamed of giving a speech, had only just started my blog and that I was still shy and struggling to find a positive focus in my life; and now look at me, all I’ve done and I have achieved – I’m not saying I haven’t worked for it, I’ve worked so, so hard to achieve everything and pushed myself harder than I should, but I have been incredibly fortunate to have had the support that I do and had the opportunities I’ve had and to have done so much in only two years. It all started with speaking in Parliament for Together for Short Lives in November 2013, and looking back, I cannot quite believe the path my life has taken since. 

Medically this has not been a great year, but I have been managed at home with is a relief. I have ITU nurses here 7am-11pm, and a carer overnight (10pm-7am) to cater for all my medical needs, I started the year with repeated urosepsis and resulting hospital admissions originating from a kidney infection, have suffered pseudo-obstructions, rapid deterioration, was diagnosed with sleep apnoea, then lung function tests revealed “restrictive physiology with transfer factor abnormalities” for which I am seeing the respiratory consultant in April – a very long way off with the deteriorating being rapid, I suffer constant breathlessness which even reaching for something in bed renders me struggling for breath, extremely lightheaded, nauseous and with a blueish tinge, so that appointment can’t come soon enough. My weakness is progressing rapidly, even laying in bed changing my stoma bag/s where I am not doing anything strenuous leaves my arms extremely weak and I can struggle to use them for a while after that, transferring from bed to chair (I have help to get to my feet, swivel and fall back onto my chair/bed, I can’t stand and can’t put any weight through my right leg) is becoming increasingly difficult and find even simple things a huge effort; again the breathlessness comes into play as even being helped to put on a top has be huffing and puffing and struggling for breath, as well as the physical exhaustion of doing such a simple task. It’s frightening. I have also seen a rapid increase in dislocations, which means I wake up most nights at least once with a completely “dead” right arm (no sensation or movement whatsoever) which can take as much as half an hour for sensation and movement to return, but full function doesn’t come back instantly and the next 12-24 hours my arm is weaker and feeling not 100%, I will be referred to Stanmore in the New Year about this. I’ve not had a great year health wise but it’s not been horrendous, but it’s not been great and the deterioration is worrying and frightening, however I have not let this stop me one bit and am determined to get on top of things so I can continue with everything I want to do. A huge thank you to my medical team for keeping me at home since April despite repeated (and now 8 or 9 weeks continuous) kidney infections and the deterioration. 

I cannot thank you all enough for your support, my followers, my friends, my charities and everyone who has come into my life and supported me and given me so many wonderful opportunities, lovely messages and of course the generous donations. I wouldn’t be where I am without you, each and every one of you; don’t doubt how much you all have touched my life and helped me grow into who I am. Gratitude is not strong enough, thank you is inadequate, so I cannot tell you how much I appreciate what you’ve done; I can only show you all that I’ve achieved and say to you, this is down to each and every one of you. 

I hope you have a fantastic Christmas, I am thinking of those who are grieving for the first year without a loved one, those whose loved ones have passed on and who are greatly missed, those who do not have family and will spend Christmas alone, those without homes, those below the breadline, those who can’t give their children a magical Christmas, to all the children in care, to those affected by war and terrorism; to everyone who finds this time of year difficult for numerous reasons, you have my thoughts, best wishes and my prayers, whatever your faith or beliefs. 

Thank you once again, 

With love, 

[and of course my loyal companion, my partner in crime, my faithful assistance dog-in-training, my beautiful girl Molly, whose blog you can follow here.]

To see my record of achievements in full, with links to the pieces or articles, please go to the Record of Achievements page

Some photos, in no particular order. 

This Post Has One Comment

  1. Blimey woman !!! You are awesome !!! This is the first time I've read anything of you and wow , you've done soooooo much , I'm flabbergasted !
    Your MBE is totally well earned, and I must say a HUGE THANK YOU for all that you do . My son is 14 and diagnosed with EDS hypermobility and POTS aged 12, and he'll be seeing Prof Aziz in Feb for the first time … you know the road he's on.
    So yeah , I want to repeat HUGE THANKS for all that you do , and wishing you all the strength and energy possible to carry on doing what you do . Happy New Year sweetpea xxx

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