I need your help to send me abroad, and give my children back their father. I’m Ben, 37, I have cystic fibrosis, and without your support I’ll have 3 months to live with bronchiolitis obliterans destroying my lungs.
Imagine the joy I felt when I received a life-saving lung transplant last year. I’d be given years of my life back with my wife and two young children, Max, 6 and Ivy, 3. I was healing.
But after perfect surgery, coming off ECMO, life support, and alive with new lungs the hospital made a catastrophic miscalculation with my anti-rejection medication which caused my body to attack the lungs. I’d had my new lungs for only 5 weeks.
Now, I need new lungs. I am in chronic lung allograft dysfunction, rejection, and have been given a few months to live.
I am bed bound, oxygen dependent and on palliative care, dying in front of my children. I can’t walk to the toilet, never mind getting to my son’s football practice or playing with my daughter.
We were then dealt another devastating blow.
Even though the NHS has admitted, on record, that they are culpable for my failing lungs, the board rejected my appeal for another transplant.
My ever-resilient wife, Daisy, is now facing the reality of becoming a widow in her 30s and leaving Max and Ivy a whole lifetime to miss their father.
But a professor has given us hope.
An expert in the pulmonary transplant field studied my case and concluded they would see no problem in a second transplant. They'veperformed second transplants on patients before, with great success. I have explored every option in my own country to the very highest level.
I will need to take up long term residency there in order for us to be closer to my wife's family and a better air quality. I need to fund accommodation, health insurance, post-surgery care and travel. I'm forced to temporarily break up my young family while we organise our future. To cut down on costs, I’ll initially need to leave my wife Daisy and my two children behind and go accompanied by my mum, who is 72, on the basis that two can live more cheaply than four. And then as we can see the future unfold move everyone there.
This is my last chance to see my children grow up, meet their first boyfriend/girlfriend, see them flourish and deliver that proud speech on their wedding day. As a couple, Daisy and I have spent the last few weeks talking to Max about the fact that his Daddy is dying. Imagine trying to tell your 6-year-old you might not be there for Christmas.
I just don’t have the financial resources to do all of this alone and I now rely on the kindness of friends & strangers.
You would be saving my life, giving me years with my beautiful wife, Daisy, my son Max, who is passionate about football, and Ivy, who’s going through a pink glitter unicorn stage right now.
I want them to know that I explored every possible avenue to stay with them for as long as I can - like any parent would.
Thank you so much for any support you can give me.
Ben’s story so far:
My journey with cystic fibrosis starts at birth in 1983; just 2 years after my sister passed away. She was 16. She would be 55 now. My mum has had this chronic illness in her life for 55 years watching two children suffer at the hands of this horrible life-limiting disease.
I spent my adult years being looked after very well at St James Hospital in Leeds, but as I grew into my 30s I developed diabetes and my lungs started to deteriorate.
I married my wonderful wife in 2012, and we set about the task of creating a family. Unfortunately for us, our only option was via IVF, with genetic testing and difficult sperm retrieval. But after two attempts we were blessed with Max, who is now 6 and then three years later, on our fourth round of IVF, we welcomed our daughter Ivy into the world.
In 2016 I spent 25 weeks out of 52 in St James’ hospital, with a 2 year old, a marriage and a business to run; life was testing to say the least - little did I know just how difficult it was going to become.
When Ivy was born my life was very typical of a CFer. I had over 4 hours of physio a day, and nebulizers, and I was taking over 60 pills a day, struggling through overwhelming tiredness while being a Dad to two little ones.
In December 2017 I became life-threateningly unwell and started compassionate use of the new modifying CF drugs, Orkambi, which at first saw great results for me for 5 months. I then sadly had to come off them due to side effects.
Fast forward to February 2019 - near death, then a miracle: I caught swine flu, having religiously had my flu jab every year, which sent me in a downward spiral of 12 weeks in St James’ Hospital hurtling towards death. A last minute urgent lung transplant saved my life.
But my family’s joy was short lived. In the fifth week post transplant, there was a serious miscalculation with my anti-rejection drug levels. I was sent into severe acute rejection. This was all admitted and apologised for by the hospital. But it was too late.
This acute rejection set off a domino effect of problems. Now in severe chronic rejection (CLAD/BOS) with only 3 months to live.
The medical board in the UK have declined a second transplant and so I have sought a future elsewhere across the globe. This has driven us to seek financial help.