Legless at 40

Update posted by Mari and Cal On Jul 13, 2017

Hello and happy summer to you all!

Sorry it’s been so long since we’ve posted an update. It doesn’t happen often but we’ve been rendered quite speechless by how fabulous you all are! Since our last update the Legless fund has more than doubled. We are continually amazed by how generous people are and by all the hard work and imagination people have put into fundraising. Thank you so much!

We have been busy behind the scenes though. A couple of months ago, we realised that we were getting close to our target and so Emma started talking to private prosthetics clinics. Our original estimate for a Genium X3 had been provided by Em’s NHS prosthetist and when she started talking to the clinics we were shocked to find out that it was quite a way under what it will actually cost. The estimate that we have been given now is £67,000. Initially we were a little worried about the jump in cost but, adding in the monies from some of the fundraising and generous donations that are saved in an offline account, we are still in a great position. Currently our total is around £51,000. There are also a number of other events coming up so we are hopeful that we should have enough to cover the cost for Em’s new leg! We are sticking with the £45,000 target on this website, as with the offline funds we would reach our goal.

Since our last update Emma has been using the C-leg, the one with a microprocessor knee financed by recent NHS funding changes for above knee amputees. There is no-one better than her to tell you how it’s been going and what difference the Legless funded Genium X3 could make to her and the family’s lives. So over to you Em…

I’ve been getting on really well with my NHS C-Leg. I already feel that my walking has improved and that I'm much safer than I was on my old mechanical knee. I can manage slopes and rough terrain better. However, the technology in the Genium X3 is a lot more advanced than the one in the C-Leg. It is more responsive, and even safer, and should allow me to do much more.

I had a really exciting and useful appointment at Dorset Orthopaedic Clinic where we talked about what would work best for me. I found out lots more about the Genium X3 and got to have a look at one (it’s very ‘Terminator’!). The prosthetist I saw said that the idea is that I should be able to do everything I want without having to think about it first. As time goes on, I am starting to be more aware about the limitations of life with a prosthetic and the idea of being able to potentially do whatever I want is amazing. We were in Cornwall over half-term and I ended up staying in the car one day while the rest of my family were on the beach because I was worried about getting the leg wet and sandy, and I didn’t feel safe on the steps down to the beach. The Genium X3 is waterproof and very sturdy, so that wouldn't be an issue, and would mean that I could do lots more with Mark and the kids.”

To give you an idea of what the Legless fundraising will cover, the Genium X3 refers to the micro-processor knee unit, which is the main bit of a prosthetic if you are an above-knee amputee. On top of that you also need the rest of the leg - a foot, an ankle, and all the other various other components that fit them together, as well as a good socket. Also included in the cost is a residential rehabilitation programme, run by the Dorset Orthopaedic Clinic, which allows for the intensive physiotherapy. Emma feels it would be incredibly beneficial to have support to learn how to get the best out of the new leg, and we agree! If you want to see more about the Genium X3 and the difference it makes in peoples’ lives take a look at this video - https://m.youtube.com/watch?v=RL44NGCy0u0.

Following from her appointment, we have decided that the best plan would be for Emma to have a trial of the Genium X3 to check that it will work for her. We are hoping that it will be able to happen in August, so that she can try it out in the summer holidays with the kids around - maybe even getting onto a beach and into the sea! We will keep you updated and hopefully have some photos so that you can see how it's working and what she can do with it. We are all very excited and more grateful than we can express to you all for helping to make this possible. Thank you!

Love [email protected] x

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Update posted by Mari and Cal On Mar 04, 2017

Hello all.

It’s been a while since we gave you an update and 2017 seems to be flying by. However, you guys have been busy being lovely and we have already reached 30% of our target! Thank you so much for all your fantastic support. It is great to see the brilliant fundraising that has been going and will be going on. Runners, musicians, swimmers, climbers, dancers, marmalade makers, the list goes on. What a talented, supportive and possibly slightly bonkers group of friends Emma has!

In our last update we told you about the recent change in NHS policy around microprocessor knees. Emma has been told that she meets criteria for the C leg, and she just wanted to give you a bit more detail about what they are and what it would mean for her (see below). She has been quite worried about the impact this would have on Legless and wasn’t sure whether we should carry on with the campaign or if she deserved a more advanced leg. However, we’re still keen to carry on with our fundraising to get her the best leg possible. One that will meet the demands of family life and give her the independence that the majority of us take for granted and that she deserves. We hope you are too, but if anyone has any questions or concerns please get in contact.

In 2008, at her hen do somewhere on the cold British coastline, Emma decided on a quick dip in the sea. The majority of us hung around on the beach in our padded coats, but Em got all the way in and splashed around quite a bit (see the new photo upload for proof!). We would love to see her equipped with a leg that would allow her to that again. Maybe she can join Clare and Izzy for their boxing day swim next year…

Thank you, once again, all for your ongoing support – you’re amazing.

Love [email protected] x


"Over the last two years I have had to learn a lot of new information fast, particularly around prosthetics and how to live as an amputee. When Mari and Cal came up with the amazing idea for the [email protected] campaign I had been told that a microprocessor knee would make a huge difference to my level of functioning but that the NHS were unable to fund these sorts of prosthetics. We were a little bit tipsy and they got excited about the idea of crowd funding for it. To be honest, I thought it was a beautiful idea but I wasn't sure it had legs (ba dum), so it has been even more amazing to see all your support and kindness start to make it a reality.

As there is a lot to learn about prosthetics, and who has time to learn about things they don’t really need to, so we thought it might be helpful to give you a brief run-down on what I've discovered. Here goes…

My current NHS leg has a mechanical knee joint. When I walk my leg swings at a set rate, so I can't vary the speed that I walk at and I have limited control over my gait. When I stand on my prosthetic, or put weight on it to walk, I have to push my stump back to lock the knee. If I don't get that quite right then the knee gives way. I spend a lot of my time being worried about falling over, and sometimes actually falling. It can also be affected by some external factors, for example the gusty winds of Storm Doris stopped my leg swinging through and I was nearly upended!

Since the campaign was started, the NHS have approved a clinical commissioning policy to fund specific microprocessor knees for some above-knee amputees. A microprocessor knee (MPK) is one that has a built-in computer which controls the movement of the leg. My NHS prosthetics team assessed me and, as I meet the criteria, has put me forward for a trial of an MPK which starts in March. This is very exciting for me, and I am delighted that the needs of above-knee amputees are being more widely recognised, but I was also concerned about what this means for the [email protected] campaign.

MPKs have been around for about 30 years, with lots of developments in the technology over this time and a wide variety of different knees available. Understandably, the one that the NHS has agreed to fund (the Ottobock C-Leg) is at the bottom end of the range. I am hopeful that it will make a real difference to my day-to-day life, but there are other knees which have the potential to make my life even easier and better. After lots of careful thought, discussion and advice-seeking, we have come to the conclusion that we would like to continue with the fundraising, with the aim of getting me the best leg available.

The one that we are aiming for with the [email protected] campaign is the Genium X3 which is the top of the range of MPKs. This has much more advanced technology than the C-Leg and should make my walking even easier and more natural. It is designed to cope with uneven terrain, it 'knows' where your leg is in space creating a natural gait and requiring less concentration, it allows you to run (I know, this seems unlikely for me, but I may need to keep up with the kids sometimes), and it is waterproof. Health permitting, this would hopefully mean that I can be more active and get back to some of the great loves of mine and my family’s lives; walking on the hills with my family, and easily spending time at the beach, lakes, and swimming pools.

One of my main aims after my amputation was to get back to swimming and I have already been able to do this. I don't need a prosthetic to swim, as I use a wheelchair and lift myself down into the pool. But it takes planning about which pools I can use and requires help from others. We went to Center Parcs this half-term, and it was lovely to be able to get into the pool with the kids, but it was pretty hard. The pools all had sloping entrances and they had a waterproof wheelchair so I could be wheeled into the water, but it meant I needed help rather than being able to help my kids. The Genium X3 would allow me to walk into a pool and even to get back onto the beach and paddle in the sea with my kids.

I hope this goes someway to explaining the difference the Genium X3 would make to my quality of life. I will keep you updated with how I get on with my new NHS C-Leg in March, but in the meantime, if you guys are happy to continue supporting the fundraising for [email protected] I would really appreciate it.

Finally, I just want to say a big THANK YOU again for all the support and encouragement that you have all been giving me, it really means so much to me.

With love from Emma x"

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Update posted by Mari and Cal On Jan 05, 2017

Happy New Year All!

We write with some news. There has been a change in policy on NHS funding for prosthetic legs for above knee amputees, which means that some patients will be funded to have legs with a microprocessor knee (originally not available when we started this campaign). We are working to find out some more details on how this would apply to Emma and the Legless campaign, particularly around her eligibility, the model of leg available and when this is likely to come into force. Our initial understanding is that this change in policy would still not cover the Genium X3 that we were aiming for, the leg that would allow Emma to work towards as 'normal' a life as possible, and we're still keen to work to get her this new exciting birthday present. We will keep you updated when we have any more news but please let us know if you have any questions, concerns or information.

Thanks again for all your support so far, [email protected] x

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Update posted by Mari and Cal On Dec 24, 2016

£10,000!! That is incredible! Thank you all so very much for supporting this appeal and supporting me. Your kindness, enthusiasm and generosity are so wonderful.

The past few weeks have been a bit rough for me - I was admitted to hospital with inflammation in my lungs, caused by my Relapsing Polychondrititis (the other diagnosis I have in addition to Behcet's, and which causes inflammation in cartilage), and have needed a lot of immunosuppressant medication to get me better again. To be able to read the lovely messages and see donations coming in while I was sat in hospital was so encouraging and really helped me stay positive - so a double thank you! Because I haven't been feeling great, I haven't managed to be in touch with as many of you as I would like to say thank you personally, so I hope that this will serve to let you all know how very grateful I am. You brilliant people!

I am now back home, being bounced on by Christmas-crazed small people, and very much looking forward to spending a joyful Christmas with my family, and to getting my strength back again so I'm ready for that amazing new leg next year!

Wishing you all a very Happy Christmas, Emma x

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Update posted by Mari and Cal On Dec 18, 2016

It was two years ago today that Emma had her leg amputated. A decision that most of us could never imagine making, and an incredibly difficult one for her. However, following the operation, the majority of tremendous pain she was experiencing was alleviated and the change to her mental wellbeing was practically instantaneous. It was obvious in her voice (and giggles) in the telephone calls from her hospital bed and Mark’s simple aside that he ‘had his Em back’.

The support Emma has received to help get her independence back and adapt to her new life has been tremendous. A big THANK YOU goes out to the NHS staff, including district and hospital nurses, prosthetists, medics, physios, occupational therapists and psychologists. To her family for supporting the Hartwoods to make their house accessible – there is something quite Star Trek about Emma appearing through the floor of her bedroom in the lift. And definitely not forgetting the good wishes and practical support from all you family and friends!

Em’s courage, bravery and strength are beyond admirable. In the last two years she has learnt to use a wheelchair and the funky scooter to get round her house and neighbourhood, so that she can have some independence and care for her family and friends. She learnt to walk again! She can now drive and swim again, and manoeuvre herself out of a hot tub with more grace than we ever remember her having with two legs. She has begun the process of grieving for the life she imagined having. And this is all in the context of managing a long-term physical health condition and working to become physically healthier. She is a true superwoman!

On a more positive note, and Emma is very good at looking for these, over the last two years parking has become easier, she has saved a fair amount of time not having to pair her socks, and has amassed an impressive number of leg jokes (we challenge anyone to out pun her!).

Over the last month your generosity with words and actions, as well as funds has been jaw dropping. Thank you all for your donations, fundraising efforts and kind messages. We reached £10k in under a month. We are so looking forward to seeing how the new leg improves Emma’s life over the next two years and beyond. Being able to get out and about with more ease, maybe take a stroll on some rough terrains, throw some shapes on the dance floor, travel easier, and most importantly gain confidence in her ability to walk again.

Please continue to spread the word and share details of our crowding funding, Facebook and Twitter pages. We will continue to update you of our progress and any events.

Lots of love & happy holidays, [email protected] x

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Update posted by Mari and Cal On Nov 29, 2016

One week since Legless went public. And what a week! £7590 from 188 backers in 7 days! 203 Facebook likes, 19 Twitter followers, and numerous heartfelt and hilarious shares (thank you Ben for reminding us of Emma's scary side!). The word 'wow' has been used by us at least once an hour, there have been lots of very excited texts sent and many messages offering support and good wishes. Thank you friends, friends of friends, friends of friends of friends, and friends we haven't met yet. You are all amazing!

Emma has been quite under the weather recently - a relapse of the relapsing polychondritis, they think. Thanks to her lovely doctors and some extra meds she seems to be on the mend. All your loveliness has also boosted her spirits (so much so she almost forgot that Gilmore Girls was due to re-start!). She is trying to contact all the people she can to say thank you and also left a message on here.

"Hello lovely people. I am trying to get round to thanking everyone I can, but I am being slow about it. So in the meantime, and for those of you who donated anonymously or who I don’t know, I just want to say a really big thank you. I appreciate your kindness, support and generosity more than I can say. With love from Emma"

A number of people have been in touch about potential fundraisers for the new year and we look forward to letting you know about them shortly. Please like and share our Facebook (https://www.facebook.com/leglessat40/) and Twitter (https://www.twitter.com/Emmasleg) pages and encourage your friends and family to do the same.

Lots of love and massive thanks, [email protected] x

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Anonymous

Backed with £10.00 On Jul 19, 2017

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I truly wish you all the best and that your new leg makes a huge difference in allowing you to do many things you cannot now with confidence!

Thomas Faulkner

Backed with £100.00 On Jul 09, 2017

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Mariah Senaa

Backed with £20.00 On Jul 03, 2017

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From my dad who was at Legfest last night but missed the sombrero. Probably at the bar!!!

Lizi Brazier

Backed with £10.00 On Jul 02, 2017

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Sorry I can't be there tonight.

John Prosser

Backed with £20.00 On Jul 01, 2017

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Get back to 5-a-side asap. Good luck. Dad

Phil Jones

Backed with £27.00 On Jun 30, 2017

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I'm donating on behalf of Gareth Jones's marathon run.....hope you reach your target....good luck ❤️

Pam Martin

Backed with £10.00 On Jun 30, 2017

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Anonymous

Backed On Jun 29, 2017 Amount Hidden

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Matt Charman

Backed with £20.00 On Jun 28, 2017

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Anonymous

Backed with £100.00 On Jun 27, 2017

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