My name is Holly & I was born on the 2nd of January 2001, I am 18 years old.. 7 years ago today I won the biggest fight, the fight for my life.
This was the day my life changed forever & this is my story...
I have a very rare condition called Frank Ter Haar, it affects skeletal, heart & eyes, I was only properly diagnosed when I was 15 years old.
Where do I start? Well my first surgery was when I was a baby (I don't remember this of course) this was to straighten my feet. I've always had problems with my hips, I learnt to crawl in a hip spicar which in simple terms my legs were casted to look like a star fish.
The issue with my hips were they kept popping out of the socket after multiple surgeries, they even put in metal screws & plates (I've still got them in a jar somewhere) but the other hip stayed in place so I walked with a limp (kids used to say that I walked like a penguin lol). I used to walk, run, I even once broke my leg skidding round the corner and falling over… That was fun, this was up until 2012 when things started to change for me.
Before my heart surgery I had recurring chest infections (because my mitral valve was leaking blood back into heart chamber because the valve didn't close properly & the valve deteriorated very fast) so each chest infection progressively got worse every time.
I was in & out of hospital every month, the hospital stays got longer & longer, every cold or sickness bug I caught went straight to my chest.
I also had AF (arterial fibrillation) this is where the heart doesn't beat properly.
I was active considering my heart was failing & making me extremely out of breath to the point where it felt like I could've passed out. I loved riding my bike in the park, rock climbing & playing video games especially when I was off school ill. Considering all of this in my younger years I had the best time in primary school & made some great memories.
In 2011 I got my first wheelchair this was to help me go out without putting pressure on my heart & being out of breath, the wheelchair was supposed to be a temporary solution until I had major heart surgery to sort out my leaking Mitral valve.
In 2012 my valve deteriorated so fast that I had to have an emergency hospital appointment up in London in the evening, I was in heart failure my lungs were filling up with fluid so I had to be on this medicine that helped get rid of the fluid so it made me piss for hours on end (My older sister hated me as I hogged the toilet) & my surgery was booked. My heart surgery got cancelled twice but I'm glad it did because I was able to attend my prom & say goodbye as it was the last day of primary school forever it was nice to feel normal.
On the 2nd August 2012 I was having major open heart surgery, I went on Cardiopulmonary bypass (basically they stopped my heart from beating & hooked me up to the machine to take over breathing & pumping blood round my body so they could work on my heart without it beating) I had my Mitral valve replaced with a mechanical one so now I have to take Warfarin for life to stop a clot from forming on the mechanical valve.
Warfarin is a medicine thins your blood & this has to be monitored very closely with blood tests every week, also foods that have vitamin K & some medicine interact with Warfarin, I also have to be careful of banging my head or knocks as I will bleed quicker & take longer to clot than someone who isn't on Warfarin) I also had some other procedures to help with AF & palpitation’s.
After surgery I sent to the ICU in a medically induced coma hooked up to every monitor known to mankind, everything was going smoothly up until Saturday late at night...
I started to feel really unwell & I was struggling to breath, they ended up doing an ultra sound on my chest & noticed I was bleeding internally, the blood was crushing my lungs making it extremely hard to breath
The on call surgeon was paged & they got the theater ready for when the surgeon arrived it was a race against time. The journey from the ICU to the theater I can't remember as I lost consciousness. My mum was at the end of the bed with surgery overalls (I had a habit of panicking with anesthetic) so she was there to ease the situation because I needed to get to sleep fast so they could relieve the blood from my chest.
Not being dramatic at all however I could've easily just stopped breathing I wasn't worried or scared it was weirdly peaceful but I didn't, I kept on fighting. Tbh I think it was seeing my mum there I felt like I couldn’t let her down & I didn’t want to leave her just yet...
They never found where the bleed came from but after that ordeal I was on my road to recovery, I spent 3 weeks in hospital altogether. They noticed my other hip was popped out & my knees were starting to rotate so after my heart surgery I never walked again without assistance, this was when my 4 wheels become a permanent fixture of me.
Also forgot add that I have scoliosis (It does crush some of my lung) & I have sleep apnoea so I use a BIPAP to sleep at night (BIPAP is a machine that breathes for you at night when you are a sleep) I sound like Darth Vader with it on but hey ho for some odd reason I forget to breath when I'm in a deep sleep.
The reason I am writing this is not for sympathy. It is because I have fought quite literally for my life to be here multiple times , the odds have always been stacked up against me walking (well wheeling in my case) into secondary school the nasty kids who thought it was funny to push me into a wall had no idea I had just recovered from open heart surgery, they had no idea how close I was to losing my life and I was silent I didn’t feel sorry for myself no I didn’t want them to know I just wished they saw me for who I was not because I’m different not because I am tiny and I have 4 wheels instead of 2 legs. I just wanted a break I had been through enough but hey I am not one to feel sorry for myself.
This is the bravest thing I have ever done, considering what I have been through so I hope to of helped people to do the same
I found myself comfortable with gaming and the community as it was faceless, I was treated like a normal person for the first time in my teenage life well I of course sound a bit husky but as normal as anyone else. Until one day naming no names but a ‘friend’ of mine found out my real name... There was news articles about me in the paper which come up on google he used this against me (low blow I know).
I am coming forward with who I am because This is the bravest thing I have ever done, considering what I have been through so I hope to of helped people to do the same, I want to make a difference I want to show people its ok to be different you should not be ashamed off the physical, mental whatever it might be. I fought so hard to be here and there is not a chance I am going to be made to feel any less of a person as someone who is ‘healthy’... I am proud of who I am and so should you be as individuals, we only have one life and when it’s a precious as ours we should embrace it, show the world how strong we are I want to make a change but I need your help I am no Martin Luther King but I hope I have touched a couple of you reading this, I hope I have helped you if you as well felt like I did or anything similar.
& lastly just be proud of who you are no matter who you are….