Nikki's Life Story

1988 May - 2020 October

Created by Andy one year ago

On the 30th May 1988, we were blessed with our beautiful daughter, Nikki.
 I remember the first time I laid my eyes on her. I stroked her cheek and said “You are beautiful”
At the time of her birth and for the following 3 yrs, no health problems were detected. Nikki blossomed into a very mischievous, happy, fun-loving, cheerful toddler.  We never allowed anyone to deny her the opportunity to try something new or visit somewhere, purely based on ‘a label’
At the age of 3, our lives were devastated when we were given the heartbreaking news that Nikki had an inoperable heart condition and her life expectancy was, if we were lucky, 15yrs. After the shock, we got back up and continued to build a fun filled, joyful life for Nikki.
Then, at the age of 14, she suffered a stroke. We thought we’d lost her, so did her consultant but Nikki’s courage, strength and resilience kicked in and she fought back. Following her stroke, she was unable to use the right side of her body which resulted in her being unable to sit unaided, walk, talk, and be independent. After spending 2 months in hospital, we arrived home where Nikki and ourselves began to rebuild our lives. Her determination to get on with life grew every day. She got stronger and although her speech returned, some weakness in her right side remained. Nikki was right handed but she learned to adapt using her left hand. She spent hours drawing, colouring and could still beat mum on the Playstation with the use of one hand! Nikki loved swimming, starting at the early age of 3months.  Nikki attended physiotherapy at our local hospital pool, this was a great aid to her recovery and she was soon swimming again unaided. We continued to do all the things Nikki loved, holidays abroad, trips to the theatre/cinema, numerous picnics and days out.  We treated Nikki no differently to any other child and as a family we shared all the wonderful experiences that all families enjoy, nothing stopped us. Life was as normal as it could be.
 At the age of 18 Nikki was transferred from her paediatric consultant in Preston to the adult heart centre in Sheffield. We had numerous trips over the Pennines were her condition was monitored. After a short time, we transferred to the ACHD (Adult Congenital Heart Department) in Manchester. The care and support from all the Cardiology consultants and staff that not only Nikki but also ourselves received throughout the remaining years was nothing less than exceptional.  We looked on them all as an extended family.
 In 2018 we were given the devastating news that Nikkis journey was coming to an end. The ensuing 2 years entailed many, many visits to the ACHD unit and occasionally to the Liverpool Heart and Chest Hospital, sometimes on a weekly basis and quite a few extended admissions.  We thought we were losing her on a few occasions during those 2yrs. Once in Sept 2018 when she was admitted into ICU and again in Jan 2019 when she suffered a respiratory arrest but Nikki had other ideas and fought back time & time again. The professional care, kindness and support we all received at such very difficult, emotional and stressful times, helped us cope immensely. They never gave up on Nikki and were at the end of the phone 24/7 should we ever need them. We extend our deepest gratitude and eternal thanks to them all, especially her cardiologist Petra Jenkins and her team and to all those on the ACC (Acute Cardiac Centre) ward.  It may be a strange thing to say but myself and Sue are going to miss them all terribly. We will never forget them. 💝
 As everyone’s lives changed, for a while, in 2020, ours changed forever. We were so afraid of Nikki catching Covid we shielded her long before the Country went into Lockdown.  We found new ways of occupying Nikkis days for her. Nikki simply referred to it as ‘the silly virus’. Just as a little normality came back into her life, being able to attend the daycentre she loved and see all her friends again, she began feeling unwell. On admission to hospital, a gallbladder infection was detected. After 2 weeks of intensive treatment, things appeared to be reaching a positive outcome. The fear of her infection turning Sepsis, had subsided. I wasn't allowed to stay with Nikki & Sue due to Covid restrictions but they allowed me to visit everyday to sit with Nikki & give Sue a break.

On the morning of Mon 5th Oct, I rang Sue, as I did every morning after the Dr's rounds. She gave me the wonderful news that it was likely Nikki would be discharged before the end of the week & that Nikki was all smiles and gave them her customary ‘thumbs up’.  I spoke with Nikki on the phone, as I did every morning & told her I would see her after lunch. We finished our conversation as we always did, I said "I Love You Nikki" Nikki said "I Love You Dad - Bye" These were the last words we said to each other. 2hrs later, whilst I was travelling to Manchester and Nikki was eating lunch, she suddenly, without warning, collapsed. Nikki never regained full consciousness again. I was allowed to stay with Nikki & Sue that evening.

On Tues morning, the 6th Oct, we held her iPad next to her, rested on a pillow and put on her favourite film, the live action Beauty and The Beast. She occasionally opened her eyes and stared intently at the screen, all but briefly.


A few minutes after the film had finished, Nikki, peacefully, passed away at 10.55am

Nikki is an example of perseverance and inner strength. She continued to fight battles in health and limitations that would crush many of us. She showed us what it is to be strong, because strength is not just found in being the biggest, the toughest or the fastest. Strength is found in one who keeps on going, keeps trying, day after day, and long after others have given up. The greatest success is found in the tiniest of victories, in this way, she is and always will be - our hero

Thank you for all the joy, love and laughter Nikki. We love you 💝 and miss you so much sweetheart 👨‍👩‍👧💘

#ourloveourlife