This is a story about our dear cousin Haley, who has been fighting a truly devastating illness for the last 10 years, Haley really is an inspiration to everyone who knows her, she is THE most positive person I know and we could all learn a few lessons, Haley has now been given the news that her prognosis is terminal and we are trying to help her build memories and complete her bucket list, please take a few minutes to read Haley’s story in her own words below and just know that ANY help you give really will be making dreams come true THANK YOU x

My name is Haley and I am 36 years old. My story begins around 10 years ago in 2009, when I had moved to the seaside to start a new life with my eventual husband. I had a job, a wide circle of friends and was very happy. We then had the unexpected but joyful news that I was expecting a baby. Life could not seem to get much better.

However three months into the pregnancy, following a routine check up, my life then turned upside down. I was told by doctors that my kidneys were failing and that I would certainly lose my unborn child as they had never heard of anyone being able to carry a baby full term with failed kidneys. In the strongest terms they recommended that I immediately terminate my unborn child and commence an aggressive treatment that would halt any further damage to my kidneys as there was still a chance that they could be saved.

Being faced with a choice between saving my kidneys and saving my child, I did not hesitate in telling the doctors that I already felt a very strong bond to my unborn child and simply refused to be responsible for termination of a life and I would let nature take it’s course. I was already being protective towards my child and would not let them do anything that might harm the baby in any way.

Having accepted my decision, the doctors then sought specialist advice from throughout the UK and it was decided that I would have a gentle form of dialysis which would keep me and the baby alive but to avoid any harm to the baby my kidneys would have to be allowed to fail completely without any further treatment. I was told this was a very unique situation but they would try their best to follow my wishes and carry the baby as long as I possibly could.

Whilst the pregnancy continued, the doctors waited for their predictions to materialise and for me to suffer a miscarriage. Faced with constant pessimism I remained resolved to continue as long as possible. However, without really noticing it, the day arrived when they said we had reached the minimum term that they could actually deliver the baby and they too began to actually believe that a healthy delivery was actually possible.

Finally, against all odds, and in total defiance of the doctors recommendations we had reached 36 weeks and the doctors felt that for the sake of my health it was time to induce the baby. I gave birth to a beautiful healthy baby girl and at only 4 weeks premature she needed very little specialist care and was ready to return home after only a couple of weeks.

However after the joy and excitement of what we called our ‘little miracle’, the reality soon set in that I was in fact now very ill, with no kidney function and the prospect of daily dialysis whilst trying to bring up a new-born baby. As my health continued to deteriorate even further, I made the decision to return home to Leicestershire to live with my family and spent many months in and out of hospital, whilst the doctors attempted to halt my decline and find the best form of dialysis for me. I suffered severe depression due to the guilt I felt at not being able to be a ‘proper’ mother to my daughter due to my health, and I missed much of her first 18 months due to my continued hospital stays.

Finally in 2011, the doctors had stabilised my health enough to consider me for a kidney transplant. I am forever grateful to my father for stepping forward without hesitation and offering one of his kidneys for a live donor transplant. We underwent what was a very successful transplant operation and I almost immediately started to feel much better and quickly started re-gaining my strength and health. I spent more time with my daughter than I had ever done previously, and I was now planning our future life back to what felt like near normality. The nightmare of the previous two years seemed to be over.

However in early 2012 I slowly started to feel sick again. Following a further check up it was discovered that my transplanted kidney had started to fail. They determined that it was my immune system that was causing inflammation in my kidneys and despite all the aggressive treatment that they could try, there was nothing they could do to save the transplanted kidney. So I was back on dialysis and back to square one.

Whilst there was positivity in that the doctors now had a better idea about what had caused my kidneys to fail which meant I would be eligible to go on the kidney transplant waiting list, this would in reality be many years away and I started to accept that my life would be changed forever.

Despite being on what was now 3 x weekly dialysis sessions, I was still able to carry on a near normal life and focus on being the best mother I could possibly be to my daughter. As the recession had eased by then, my future husband was able to find work in the local area and could finally move down so we were able to find our own house and all three of us could finally live as a family again after the best part of 3 years having lived in separate parts of the country. Things were looking very positive again and I was building up to the day that I got the call that a kidney was available for transplant.

However in 2013 I was rushed to hospital following a very sudden and unexplained bleeding on my lungs. Following this, I was finally given an accurate diagnosis of my condition, which is a very rare and aggressive form of vasculitis, the particular variation of which specifically causes my own immune system to cause inflammation in a very specific sized blood vessel found in the kidneys and lungs as well as other parts of the body. As the doctors now had a diagnosis, they were again able to stabilise me and did not even rule out a potential kidney transplant in the future, with the correct strength of immune suppressants supposedly able to keep the vasculitis at bay, although there was no cure for the condition. As my various access points for dialysis failed time and again and I picked up various infections due to being permanently immune suppressed, I spent the next six months in and out of hospital, surprisingly to everyone I managed to make it to my own wedding albeit with only days to spare! Given the short notice, family and friends came together to make our wedding day very special to us and we were again, very happy.

Despite my continued poor health with continuous dialysis sessions I was still determined to be the best mother and most supportive wife possible and as my mobility had impaired considerably I began to use a mobility scooter, despite disparaging looks from other parents and almost daily abuse from pedestrians due to them perceiving such a young person on a scooter as being ‘lazy’. I was determined to maintain my independence, continue to support the household by doing the shopping and school runs myself and would not let my illness defeat me.

Following the joyful occasion of our wedding day, the next several years saw a continued decline of my health as the doctors fought an almost daily battle of keeping my vasculitis at bay, the treatment of which was in direct conflict with being able to maintain a stable access for my dialysis and I had dozens of operations, developed many further secondary conditions, including the discovery that my bones were being washed away after breaking both my hips and having a double hip replacement, the loss of one of my eyes after my condition attacked it and further loss of mobility and further serious permanent conditions as a result of many years of aggressive medication to attempt to halt my decline.

Due to extended hospital stays, which on one occasion was nearly nine months, within a 5 year period I missed many key events in my daughters life, such as birthdays, Christmases, her first day at school and also had to deal with my daughter growing up, to realise that her mummy was ‘not normal’ and the heartbreak of my daughter feeling that I had ‘abandoned her’ when I was in hospital as she was too young to understand that I was sick and it was not my fault.

However despite these lengthy hospital stays, we stayed resolute and strong as a family, picking up the pieces of family life after I was discharged and going out on many short trips as best we could, whilst dealing with the constant limitation of me having to attend dialysis three times a week.

My whole outlook on life is to have no regrets, to live life to the full, and remain positive and strong for my husband and daughter. Despite numerous further flare-ups of my vasculitis, which on at least one occasion resulted in me needing to be rushed into intensive care and the belief by the doctors on several occasions that that I would not survive the brutal attack on my lungs, each time I have almost defied medical convention and fought right back to as best health as possible, much to the amazement of the medical teams looking after me. I have never once felt like giving up and I vowed to fight on and on always to get back home to my family.

After nearly two years of relative stability health-wise, we again started making plans for the future and preparing for me to finally be able to go back onto the transplant list and despite the desperation and generally extremely tough times, we all felt that we had got through this and could really look with positivity to the future.

However in mid-2019, my vasculitis returned very suddenly with a vengeance and within the space of a few hours, I gone from enjoying a weekend away in Cornwall, to being critically ill and on emergency treatment with the doctors again rating my chances of survival as being quite slim. However only a few hours later, again I made a dramatic recovery and again I left the doctors astounded at how quickly I bounced back.

However at that time I did not know that my latest flare-up had a cruel twist to it. Given the many dozens of procedures and operations and various access lines I had over the years, the options for actually gaining physical access to my body to dialyse, the process of which involves essentially taking all the blood out of my body, filtering and cleaning it and putting it back into my body over several hours, were reducing each time. However as the ultimate aim was always a kidney transplant, it was likely that I would have received a kidney before the options for access ran out.

As a vasculitis flare-up means that my blood cannot be thinned for the dialysis machine as it would cause my lungs to bleed me to death, this almost inevitably means that my dialysis access becomes clotted and fails and means that yet another part of my body cannot be used for access.

A few weeks ago the medical team sat down with myself and my family members and told us the devastating news that it was now physically impossible to give me another kidney transplant and furthermore they had actually reached the very last option of providing access in my body for dialysis and when that fails I will die. Whilst they undertook to install this last option and it actually worked really well, the hope was that it would last a few years. Much to everyone’s horror unfortunately that too failed after only a few weeks and I was very suddenly faced with only days to live whilst the doctors frantically tried to come up with yet another solution, whilst the toxins slowly built up in my system and I lay slowly dying. Fortunately due to extraordinary perseverance by the medical team at the Leicester General, they had one last desperate attempt to get a line in despite the scans not being favourable and fortunately they managed to get a working line in and my life was saved at the last minute.

Despite the euphoria of yet again seemingly to cheat death, the reality is that the lines are not expected to last very long and I will at some point in the not too distant future be faced with the prospect of only one, possibly two weeks to live. The reality of the situation has further hit home as I have now been referred to the local hospice and palliative care team for ongoing support to make me as comfortable as possible during the last stages of my life.

Whilst you could argue that I am too young to die, my greatest fear is leaving my daughter, husband and the rest of my family behind and now that I have accepted the reality of my own destiny, I feel I need to now make some final and special memories with them, and try and do everything that I intended to do in the time I have left, within reason, had I been expecting to live a long and healthy life.

Therefore I have created what is normally called a ‘bucket list’. Unfortunately I am severely restricted with my health and my strict need for dialysis (so I have had to cross off trips to Hawaii and New Zealand), however I have chosen adventures and activities that my daughter, husband and wider family would actually like to do themselves as the purposes of these trips I feel are not actually for my benefit, as I will not be here after all, but they are for the benefit of my family who will have treasured memories to look back on when I am gone.

This is especially true for my daughter, now 9, who, understandably does not want to think of me or know me when I am ill, instead referring to fond memories of what she can remember when I was a lot healthier. As I am truly heartbroken and devastated that I will not be around to see her grow up into an adult and be there for all her own special milestones as any other mother would be, I feel the best gift would be to leave her with treasured memories of her mother that she can look back on and feel that in someway I am still always with her throughout her own journey through life.

I have never been one to ask for anything. I never moan or whinge or complain about the hand that I have been dealt with as I accept that is life. I would hate to think of myself asking for charitable help however I have to be realistic and accept that to do the activities I want to do to make these memories with my family, in such a short timescale will cost a lot of money which I simply do not have. Therefore I am swallowing my pride and asking for help of whoever is reading this, in the hope that they might find hope and inspiration from my story and be willing to donate whatever they may see fit in order to help make my dreams come true and be able to make special memories with my daughter in the little time I have left on this planet.

As I am not a materialistic a lot of the items on my list are very small and special things and do not need great expense to come true. There are some more expensive wishes but the one thing every item has in common is that I will be doing them with either members of my close family or my wider family as it is the memories that are the most important thing. Among the more expensive items are;

-Go on the Eurostar to Disneyland Paris for the weekend (max. 2 nights between dialysis sessions).

-Go on a mini-cruise (again 2 nights maximum for dialysis) to northern Europe.

-Have a spa weekend

-Go on a helicopter ride

-Go on a plane ride

-Dine on a Pullman train.

-Visit the wider British Isles including Ireland and Isle of Man.

-Various trips to theme parks / holiday parks in the UK.

-Theatre trips to London (Would LOVE to see The Lion King) / afternoon tea at the Shard etc

There are many further items on my list these are small and personal and do not require as much expense, (eating out at TGI Friday's) Hopefully you would agree that compared to most peoples bucket lists, the above is quite modest but practical in my current health condition and restrictions between treatments.

Thank you for reading my story and I do hope you can find it in the kindness of your hearts to donate to this cause so that I may create some final, special memories with my family.

So Much Living To Do, With Love and Hope

Haley

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