In creating awareness for our fundraising campaign I’ve been researching stories, inspiration and news to up date our supporters with. As a parent of a one year old with cystic fibrosis this has been incredibly hard. I see pictures and stories of bonny, healthy looking babies, people climbing Mount Everest, running marathons with CF. Getting married, travelling the world. Equally I see stories of lung transplants, premature deaths, illness and campaigning for treatments deserved. In the early days of Minty’s diagnosis I could not read or look at anything to do with CF. I was too traumatised and worried for her future. Now I have developed a shell that enables me to read these things. I know other parents with newly diagnosed children do the same. Every now and then the shell cracks and you fill with panic. What if…. what if she needs a lung transplant, what if this time she needs IVs, what if I’m not doing the physio correctly, what if she catches this bug or that bug. I’ve also developed a feeling of hope for the future, a hope that is driving my wish for a cure. I want to see her marry (if she wishes!), achieve all her goals and live a happy and fulfilling life. I am aware that her future is uncertain and we try to live each day with joy and happiness. I am grateful for the support we have received in our fundraising journey. The many people with CF and their families I have met on social media. We are like a big extended family in someways. Thank you. If you are a parent reading this and you have a child just diagnosed, know that there are hundreds of people there to support you. Things will be OK. That’s it for my emotional outburst this morning! Have a good day. May if CF Awareness Month in the US. What if… everything turns out OK. What if… a drug is announced that will help Minty. What if… a cure is found!
On June 8th, my husband and I, plus four amazing friends are going to jump from a plane travelling at 120mph to the ground. We hope to raise thousands for CF Trust in the process. Are we adrenaline junkies looking for our next fix? Absolutely not. Each and every one of us is terrified of heights and has put the actual practicalities of it to the back of our mind. I do sincerely hope that we do not land SPLAT onto the ground.
The fundraising so far has been great fun. We’ve bonded as a team and are coming up with new ideas to raise funds. Tonight Clifton Therapy Centre, relaunching as Victoria Rose Salon, in Bristol is holding a raffle in aid of our cause. In a week or so our local community is holding an auction of goodies and personal time to support our cause. Every donation that comes through fills me with absolute awe and gratitude. From £1 to £200 I am touched by the amazing generosity of people, people give who you never imagine, friends of friends, long lost friends and family members. Other fundraisers even donate their own money. It is an amazing thing fundraising. If you’ve never given to anything before or raised money, I highly recommend it. You see the best of the human spirit and restore faith in humanity.
Cystic Fibrosis is a dreadful condition.
Every week 5 babies will be detected via newborn screening in the UK. It affects about 1:2500 births. The week Minty was diagnosed, a mutual friend’s child was diagnosed one week earlier. He lives 1 mile away. Since her diagnosis another friend’s niece was diagnosed. 1:25 of Caucasians carry the defective gene – that’s around 2 million people in the UK. When two people with the defective gene have a child, that child has a one in 25% chance of having CF, 50% chance of being a carrier. Anyone related by blood to myself and Paul has a chance they are a carrier and may choose to get tested. So far, several of my cousins and family members are coming back as carriers. If you have two copies of the defective gene (of which there are thousands of types) you will have CF.
“Cystic fibrosis is one of the UK’s most common life-threatening inherited diseases. Cystic fibrosis is caused by a single defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. – See more at:http://www.cysticfibrosis.org.uk/about-cf/frequently-asked-questions#na”
Meet our amazing team of skydivers!!
We are four Bristol based doctors (graduates of Bristol University), one Bristol University fourth year medical student and one Bristol-based Counsellor.
I’m Minty’s mum and a delta F508 carrier. I’m not stopping fundraising until Minty can have a normal life. Every day I wake up and check the news to see if there are any treatments for her CF genetic mix. Not yet, but one day there will and it will because people like you gave a few pounds to help. It does make a difference. Please give! Thank you!
I’m Minty’s dad. Minty is a cheeky ray of sunshine. Her favourite things (apart from Mummy) are “playing music” and dancing. Every day she has to put up with many syringes of medicines to keep her healthy, enzymes to swallow with every meal or snack and physiotherapy. She does it with a smile and a giggle. But despite all this, she has had multiple infections in her short life so far, and her future health is uncertain. The CF Trust funds research that is developing medicines to help many people with CF. There is no specific medicine for Minty’s genotype yet, but with more research and develplment this can change. That’s why I’m fundraising for the CF Trust. Please support our jump for Minty! Thank you.
For a long time I have been aware of the medical issues that people suffering with cystic fibrosis have to deal with. Meeting Minty and seeing exactly how the disease impacts upon her life and the lives of her family has however been more eye-opening and inspirational that I’d ever thought. There is currently ongoing research into the development of medications and medical techniques which aim to prolong life expectancy and improve the life quality of cystic fibrosis sufferers. The potential of these new interventions is huge. Real advancements in the treatment of cystic fibrosis are possible and in a time frame that would significantly help Minty and other children of her age. Such advancements could increase her life expectancy by 20-30 years and enable her to lead a much more normal life. The Cystic Fibrosis Trust helps raise money to fund this research and offer much needed support to affected families.
Like most sensible people, the thought of jumping out of a plane (or rather being pushed out by the instructor) is pretty terrifying. Doing a skydive is something that I have always very much wanted to do however have never found the courage to actually go through with. This is an opportunity for me to do something challenging in support of a charity that can and does make a huge difference to those affected by cystic fibrosis. We are hoping to increase awareness of the charity and hopefully raise a good sum of money to help them continue their work.
Any amount of money that you can give to help us achieve this goal and support Minty would be extremely helpful and very much appreciated.
I have long been an admirer of Sethina’s drive and tenacity to tackle any challenge head on and now I have the opportunity to do something to help too. And what a challenge we have to take on… As you have read above cystic fibrosis is a disease that shortens the life of too many. But curative treatments are a only short reality away. All we need to do is help provide the funds so research can continue and achieve this amazing goal.
So please sponsor me to hurl myself out of a plane from 21,000ft. It’s a terrifying thought and not even having a strapping skydive instructor strapped to my back makes it sound any better! Whatever you can give will make a huge difference in the future of all CF sufferers and in particular Minty and her amazing family x
I’ve been a very good friend of Minty’s dad since we were in University together in the early 90’s. When I heard the news that his new baby daughter had cystic fibrosis I was very concerned for everyone. I cannot imagine the emotions and stresses that Paul and Sethina have been through in Minty’s first year, but when I visited the other day I had a great time playing with Minty and whatever struggles they have gone through, I think Minty is testament to what an amazing job they are doing.
Doing this Skydive is a way for me to kill several birds (hopefully not literally!); to give my support to the family and to the research that could make such a massive difference to Minty’s life, to realise a dream I’ve had for years of doing something like this, and to lose a little weight to get fit for it. I’m also really glad that I’m doing this with Paul – as we have been through a fair few scrapes/adventures together!
So please sponsor me/us and make the difference when we’re jumping out of a plane at 10,000 feet!
As a medic, I understand the clinical side of Cystic Fibrosis and have spent time with patients with the condition. I can see how research has already made a huge improvements in healthcare for those with the condition but I also see how much further we have to go.
As a mummy, I can’t imagine how I’d deal with the news of a diagnosis of life-limiting condition such as CF in my own children. I see how much daily effort (over and above all the things that you do as a parent anyway) Sethina and Paul make with Minty to give her the best possible chance at a normal life.
As a mummy-medic, Sethina has been an inspiration to me for quite a while – she was very important to me in helping me make one of the best decisions of my life to retrain as a doctor. I’m doing this for her, for her gorgeous daughter and for all the other people for whom more money into research via the CF Trust can make an enormous and positive difference to their lives.
I’m not normally scared by much at all but the idea of a skydive genuinely terrifies me – I am seriously only doing this to raise a big wodge of money – let’s make this happen!
Our jump date is set for June 8th 2014 in sunny Swindon.
For me children and career are entwined in a complicated relationship of progression and pause. Had I never had children I would never have become a doctor.
My journey to becoming a doctor began 16 years ago when I was pregnant with my first child. I encountered the medical profession in ways I never had before, saw amazing doctors who were brilliant role models. The decision to become a doctor was an epiphany, a complete realisation that this was the job I should have done all along. Deciding to do this at a time when I was about to become a mother seemed ridiculous and absurd. My career aspiration was set within a few minutes of my epidural ‘kicking in’. I went from the worst pain in my life to no pain whatsoever. That was it, from that moment I had to do that job. I was 28. The anaesthetist was a magician in my eyes. How he knew what drugs to use, where to place them and to what effect. This was something I simply needed to do.
From that point my journey to become a doctor has taken what seems forever. The journey has been complicated, hard but extremely rewarding. I spent the next 6 years holding my dream.
Just six more years.
I was working in my other career but most of all raising my two girls 5000 miles away from where I wanted to go to medical school. I volunteered in a hospital developing x rays, watching births, making coffees and many other things to see if the job would be worth the sacrifice it would entail.
I waited and waited until I could apply to medical school. I wrote to the BMA. I should have kept the email they sent. They told me that very rarely did people over 30 get into medicine, and indeed their brains did not have the ability to absorb information and learn quickly enough! I applied and was rejected. I waited again and applied again, this time receiving two fat envelopes inviting me to interview at Bristol and Kings the day after I was told my husband had lymphoma. I explained to the Universities and withdrew my applications. I applied the following year and was invited to interview at Bristol.
Just one more year.
This time I flew 5000 miles and arrived to be asked first in interview ‘you didn’t just fly all the way from America to do this interview did you?’ ‘Umm, yes.’ was my answer. I was 33.
I was unable to do the five year course as I did not have science. No bother, I was delighted to do the six year course.
Just one more year.
My first day in medical school was awful. Starting on the 6 year course I was given a physics exam which I could not do. I thought they had made a huge mistake giving me a place for I would never be able to pass this course. I passed. Balancing medical school with family was hard, but not impossible. As I mentioned the two are entwined. Exams always coincided with school holidays, so when others revised I was making craft projects and cooking dinner. My marriage did not survive and in the third year I made the decision to carry on my degree despite great personal and financial hardship. I felt like I was racing against the clock, trying to finish my course before I got too old. During my time in medical school I always knew it was anaesthetics for me. SSCs, placements and electives confirmed it and I worked hard to demonstrate my commitment to specialty.
Unexpectedly I remarried 2 months before finals and became pregnant with my 3rd child. The job I had finally waited for was due to start when I was 20 weeks pregnant. I was advised not to start. But I’d gotten the anaesthetics and ICU F1 job I wanted and couldn’t wait to start.
I was extremely ill during the pregnancy and developed pre-eclampsia. I decided to go part time doing F1 over two years,which again wasn’t part of my planned career journey. Yet, more time to wait to start my anaesthetic job. I met with a careers adviser for support in my first 3 weeks of F1. She told me that ‘I didn’t stand a hope in hell’ of getting an anaesthetics job and in fact told me I should give up medicine altogether! I politely said that I hadn’t sacrificed so much to get to this point and give up. She also said that my CV would not be as competitive as my ‘younger counterparts’.
Just one more year.
My husband and I were keen on more children. Having had my third aged 40, having another one seemed a challenge. Another clock was ticking. But aged 42, I finally had my last and fourth child. This added another year to F1 training.
Just one more year.
F1 seemed to last forever. It was extremely difficult. But I kept my enthusiasm alive by hoping one day I may get an anaesthetics job. I worked hard on audits, presentations, publications, courses and as much as I could to demonstrate my commitment to specialty. In my early 40s, I attended my interview. I knew it would be tough as needing to stay in this area means tough competition. But I know that not having the luxury of time I had to worked hard to get the job.
Waiting one month for my interview results was hard. I was gutted to see that I did not get an anaesthetics training place in Severn. There were 21 jobs and I scored 24th. I was upset to see my lowest marks were awarded for commitment and reflective practice; the two things I had worked most hard on over the five years.
But I am delighted to say that I applied for a place through clearing and I am now doing ACCS Anaesthetics in Wales from August. I shall be commuting to South Wales from Bristol. I am very excited to finally be training in the job I have waited years to do, I shall be, ahem, 40-something. I am also really excited about joining Wales Deanery. There may be twists and turns, hurdles and roadblocks but eventually I am getting there; making sure I enjoy the journey along the way.
If I see you I will beep my horn across Severn Bridge.