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Hi Tim, I had to comment on your story, My son Dylan has cystic fibrosis, he's 13 today. He was diagnosed from birth and we have had alot of ups and down with his health. our main problem at the moment with him is he's rebelling against his gruelling treatments and medication which I sure you will understand how hard it is. We are hoping this is just a phase he is going through and soon he will realise to stay healthy he needs to keep these up. He understands that he needs the medication and treatment to keep him healthy and alive. Thanks so much for your story its giving me hope as am sure it will Dylan when I show him this story. All the very best for your future.

Dear Wendi (and Dylan), Thanks for your kind sentiment. I know exactly how you feel and your worries would resonate with my own mum as I did have my moments in my teens when it was all a hassle and didn't fit into 'normal life'. My blog highlights some of the challenges that I face to keep my motivation not to cut corners with my meds. My mantra has always been - 'you're only as healthy as your last treatment'. I know it's tough (for both of you) but see how CF fits into your normal day. There's 24 hours of which CF will need your attention for up to 2 hours. That leaves 22 hours where your the boss and CF can be set aside. Hope that helps. God Bless. Tim.

TIM, your blog has touched me in so many ways,
Congratulation on you success with your new boy:)
I have cystic fibrosis myself im nearly 22 years of ages and i could say im doing ok with my health,
funny thing is only a week ago my guy best friend asked me about my thoughts on having kids, to his surprise my thoughts on having children had sadly changed, (I said no)
he was shocked and i could tell by his change of voice he was very sad to know that i had chosen to accept that decision,

I dont know weather i was being a little selfish or just feeling down, as much as i would love children i can only worry about having a kid than becoming sick and him/her not having a perfect life there meant to instead beside me in my hospital bed always worried and not totally understanding?

listening to my best friends thoughts has made me think allot as i respect his opinions more than my own in allot of discussion, but to actually read and understand someone with cystic fibrosis the way they think was inspiring.
You made me see to actually have a kid it makes you work and want to achieve better health in yourself for your child,
Thank you Tim for opening my eyes to my decision to wanting a child in the future, im not going to give up, ill fight harder to want to be healthy so i hopefully one day when im ready to have a kid ill be there for him/her,

thank you again to my best friend for caring so much and to you Tim for making me see it all in a diffent and positive way

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hayleejayne,
My partners mum has c.f. Shes at least 45 and he is one of FOUR. He is 24 and she has 3 other boys and a girl, she had her youngest at about 35. I know people with c.f have decreased fertility particularly the men but she has had 4 lovely children naturally and is going strong , I think todays modern medicine is improving life quality and quantity although everyone is different I believe there are alot of people with c.f living good lives although taking things slower at times. I think a positive attitude means people can achieve more than expected, so there is hope if you want to be a super mum, you may regret it more if your 55 with no children, go for it :D Take Care

The key to living with any disability/condition is to focus on what you CAN do, and in finding ways in which you are able to do all the things that you want to do. It's good to hear how all you good folks are just getting on with the important stuff like having relationships and children. All the best...

Hayleejane, Thanks so much for taking time to comment and I'm touched that my story has 'spoken' to you. If you go through my blog posts you'll find one entitled 'From here to paternity' which will give you even more insight into my path to being a dad. In short, in my 20's I wasn't ready for kids (like most chaps who have some living to do first), but it wasn't until I was in a stable marriage and my health was holding up that I felt empowered to go down the IVF route.

I honestly beleive there will be some useful drugs coming through in the next two years that will make our CF lives more tolerable. Back yourself to do your meds, not take any shortcuts and if you want to try for a family, then all the luck in the world.

All the very best and stay healthy
Tim

Rebecca and Megan,

I couldn't agree with you more. I've learnt over my 40+ years that a combined physical and mental approach is the key to beating off the ravages of CF. Physical to get exercise (any form is useful) and take your meds and mental to summon your own motivation to keep at it day in day out and be as relentless as CF is! Identify what your goal(s) is and make that your driving force.

Thanks for your comments
Tim

Have a daughter with CF who is just coming up to her first birthday, so reading a story like this is an incredibly positive experience as we sometimes stare down what we fear may be dark tunnels ahead. But, so far and touch a very large piece of wood, all has gone well, and we hope that a combination of her spirit, our muddling through, and the crack-team of experts at the Leicester Royal will continue to ensure we have a healthy and happy toddler who just happens to have CF. Thanks for sharing, Tim. Here's to all our futures...

Fortunately there is now a cure - drug trials start this month on a genetic cure for CF that prevents the excess mucus being produced, so you will probably have a normal life span soon.

I have a stepdaughter with CF. She also tried for a child and we tried to talk her out of it. So I'm sorry to say that, given what you knew 5 years ago, I think it was irresponsible and selfish to have a child with 5 years life expectancy left to you. How will your wife and child get on when you're gone?

Unfortunately, when my stepdaughter was born, as you say, life expectancy was teens to early 20s, so her mother spoiled her. She gets DLA and other benefits and seems content never to work (and she could work from home if she wanted to) and is now dreading being re-categorised in the new government benefits shake-up. I think it would be the best thing for her... although her idea of work now seems to be to become the next singing sensation. Sigh.

Whenever she bemoans her fate I mentally compare her life to mine. If she has gone at 41 she would have enjoyed more recreation time than I will have if I live to be 85. Without ever needing to do a stroke of work, experience the pressures of providing for a family (and guaranteed benefits for life is not pressure, believe me).

Yes, she has her crosses to bear with all the drugs etc, but there have been very great compensations in a society like the UK. It's clear that even she knows this since she is talking about not taking the cure! Even though it doesn't involve any surgery or anything, just take a drug, the thought of having to provide, if only for herself, scares her enough that she prefers to die young.

So the moral of the story is this. If you have youngsters with "incurable" diseases, don't believe it, don't molly-coddle and spoil them. Assume that a cure will be found, because in this day and age, with science advancing as fast as it is now... it probably will.

Bring them up to be the sons and daughters you always wanted them to be, independent, strong and capable.

Chris, I have CF and I can tell you there is no cure and not one in sight. For almost 20 years now they have suggested that a cure for CF is around the corner and sadly it hasn't come. I have no idea where you got the impression that there was a cure. Also, any drug to arrive will not reverse the damage already done to the lungs, so a 'normal life span' would not be possible.

I would also like to point out that people with CF can have lung transplants, therefore one may have X number of years to live, but with a successful lung transplant that figure could potentially have decades added onto it - especially considering the advances in the transplantation process and care.

Hello Tim,

Very best wishes to you and all other CF sufferers and their families. I was diagnosed with CF at 40 years of age and am now 51. I guess this shows there is a broad spectrum of genetic variations and severity of symptoms and I know I have been less badly affected than most.

I have seen enough though to be inspired and encouraged by other patients, their families and the dedicated medical people who are working so hard to help.

I have seen people lose their lives waiting for a lung transplant and would encourage everyone to register as a donor.

I couldn't agree with you more on the need to take your meds, and to exercise as much as you can. I always loved sport and trained and played as much as I could, which I think alleviated the symptoms, slowed the progression and along with my particular genetic variation may be the reason for such a late diagnosis.

All the best

Gary

Hi Tim,

I've just read your story and wanted to say how inspiring it is. I wish you and your family all the best for the future. Thank you for sharing your journey; I'm sure it will help and inspire others.

@ Chris, by cure do you mean the drug Kalydeco? If so it is not a cure, it will treat only minute amount of people who have a rare type of CF and that's only if it is even approved for use in this country.
Quite frankly you sound rather bitter and jealous of your step-daughter

Dear all,
Thanks to those that have taken time to comment. Here's the bottom line for eveyone that reads my blog and these follow-up comments: 'Life is too short'.
Let's think of that before we criticise anyone having to suffer every day of their lives. When you inherit something as rotten as CF, your genetic make-up will also play a part in how you tackle the illness. Like there are no two people with exactly the same type of CF, there are no two people who manage it in the same way.

I think it's unfair to castigate anyone for not managing their CF like someone else but offer alternative approaches and work on their motivation.

As for a cure, similar to Andy, I've been hearing about the 'cure just around the corner' headline since they have the CF gene on the chromosone back in 89; so I don't get my hopes up too high as I've suffered too many false dawns.

I will say that there could be some ground-breaking meds coming through in the next few years outside of gene therapy that won't be a cure per se, but will make a CF life an easier one. I've always thought that the least my lungs are ravaged when these drugs come along, the more of 'cure' they could be. For us CFers, even a 10% improvement in our lung function would make us feel superhuman!

God Bless
Tim

I didn't say 'round the corner' I said it's in clinical trials starting this month. You can choose to believe me or not, strangely that was exactly the reaction I got from my stepdaughter and then she checked it out and was told that it was delayed unless funding could be found. Then it was only for some gene types... then they found a version to cover her gene type quite soon after that, so... she is waiting and expecting to be cured shortly.

I understand it will correct the lung function but not the digestive issues, but the lung function being fixed is sufficient to make her life expectancy normal. And I expect the digestive issues will be fixed in time as well.

You can choose to check it out, or not... your life, your choice.

I'm not surprised at the emotive response to my post. I'm sure the expected / acceptable responses to most here are along the lines of "Awww. There, there", but you should keep an open mind and realise that not all people with CF are the same and not everyone with CF is a perfect human being in every other respect.

The way my stepdaughter has treated her mother and her former fiance is disgraceful and entirely due to her belief that the world revolves around her, so please do NOT presume to judge me given that you know nothing about the situation - and I'm not here to discuss details of my private life, so that's how it's going to stay.

Ok, I'm out of here, all that needs to be said has been said.

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Hi Tim,

Just wanted to say your blogs have always been inspirational to me..and your humour throughout takes the fear out of CF.

I just wanted to say in response to a couple of Chris's comments that firstly the fact that you consider it selfish to bring a child into this world when someone possibly only has 5 years left of their "estimated" life expectance. My father died when i was 4 years old from cancer, of which both my parents knew the cancer was likely to be terminal before i was concieved. I can without a doubt say that i am very happy to be sitting here today and am of course grateful they made that decision, i have fond memories of the time i had with my father. In fact i think the fact that we knew time was short meant we probably spent more quality time together than most families.

I am also a mother of a G551D baby with CF who would be able to take Kalydeco if approved and can assure you this is not a cure even in one so young. I don't need to elaborate as others have on the subject.

Anyway Tim thanks again for your inspirational story and "Little Dude" if gorgeous!

Dear Austen742 (sorry I don't have a name for you),

Thanks so much for your touching and insightful comments, not least about your father. Gosh, that's a tough pill to swallow for one so young.

Do hope your CF child keeps well until the new drug comes along which though it may not be a cure, I am led to believe will be of considerable help.

The power of humour cannot be underestimated when dealing with tough times, especially something as cruel as CF. All those that know me are fully immersed in my light-hearted way to get through life. I have been labelled in the past as someone who can't take anything seriously and will act the clown socially and at work. If those people with non-CF could live through just one day in my shoes with all the treatments, coughing and unpleasentness then their eyes would be most definitely opened. When I have something so awful and real affecting me every day, it's my defense technique to smile as wide as I can and 'enjoy' my time on this earth.

BTW - 'litttle dude' sends hugs!

Cheers
Tim

Ahh can't believe the BEEB censored me and didn't approve my comment - glad I dodge my TV license now :p

I didn't write anything I would consider offensive or say anything that I feel shouldn't be said to someone who would write something such as Chris has, so I will leave it to your imaginations of what I wrote and can only guess we will all be on the same page!

It is a complex decision to risk passing on the genes for a serious illness to future generations. While every life is worth living, I would not want to condemn any of my descendants to a life of suffering. Would a genetic surrogate be acceptable ?

Amazing article, and gave me as a male CF sufferer even more hope that IVF can work for males with CF. I know of others where it's worked, but more cases where it hasn't. I know all IVF carries no guarantee of success, so it's nice to see as many as possible with my condition who have succeeded! Wishing Tim, Katie and 'Little Dude' all the best.

Dave

Dear David,
Thanks for your kind words. IVF is an extremely difficult process and it wasn't unitl our sixth cycle that we got pregnant, but we wanted a child that much that we kept on. My wife, Katie, put herself through the mill in order to bring Felix into our lives, and that's even before the actual child birth!

Reflecting on M Troll's comment, I can appreciate the sentiment. I would like to state that we knew Katie wasn't a CF carrier before we did IVF, so there was NO way we would have given actual CF to any child we were planning. Felix is a carrier and not suffering in any way. In fact, I would go as far to say that he is my 'healthy clone' and as vibrant as any boy I've ever seen at his age!

If the situation were different and Katie was a carrier, we would have needed to undergo a different form of intricate IVF to select non-CF embryos.

If this was not an option and a CF child would be the result of IVF, I would have to think hard about bringing a CF child into this world. My sense would be that I would not do IVF if that was the case...

So Felix is a carrier and any future partner would need to have the carrier test so that they know their chances. I think in this modern world to be pre-warned is to be pre-armed. When he is old enough, we will explain this all to him.

Kind Rgds
Tim

Thank you for sharing your experiences.

A friend of my has CF and needed a liver transplant due to the anti-CF drugs damaging her liver. She has since had a new liver and is responding well.

Shes 22 and we have been advised since childhood to cherish the time we spend with her and make the most of it.

You have really cheered me up that people with CF can live way past their life expectancy.

Good luck for the future and thank you.

@Chris - there is no cure for CF. Details for the phase 2 trial gene therapy are being discussed by the Gene Therapy Consortium who will run the trial. IF Phase 2 is successful the next stage is a Phase 3 trial which will require tens of millions of pounds of funding and we don't know where that would come from yet. Kayldeco will treat a small percentage of people with CF but has not been approved for use in the UK. Research into a version of Kayldeco that would treat people who have the commonest (Delta F508) CF mutation is underway but hasn't reached trial stage.

Please check your facts before posting comments about a cure. My daughter has CF and our hopes have been raised and dashed by people talking about a cure ever since she was born. CF is a complex condition and there is unlikely ever to be a single treatment that will cure it. Your relationship with your step daughter is between you and her - but everyone with CF reacts differently to their condition so advising parents not to "mollycoddle" our children as a cure will soon be found is not very helpful.

The good news is that new treatments are in development that will continue to improve the lives and prospects of people with CF. There is plenty of cause for optimism but we should remember that living with CF is relentless - Tim is a great inspiration for others living with CF.

Hi there Tim thanks so much for your reply, I'm sure when I put it to Dylan about only 2 hrs are took up with treatments and meds he will start seeing things in a different light and realise that his life doesnt revolve around his medication. once again I thank you and wish you all the best of health and happiness, enjoy your boy, he has amazing parents who adore him and give him all the love and attention he needs, yes you might have an illness but that doesnt mean you should be childless. Many children today are born unplanned, unwanted and unloved yet nothing is said to these people, whether it be 1yrs or 40yrs you have left with your son he's got a Dad who worships him, what more could a child need

best wishes
Wendi and Dylan x

Hi Tim
Luckily I do not have cf or personally know anyone with this condition...but I was delighted to read your story. I am the proud Mummy of four children and fully understand the joy being a parent brings. No one can predict how long they will live - parents can only do their very best to try and live as long as they can and be the best parents possible for their children. You are very obviously being the best Daddy possible for your little boy, and I hope you will achieve your goal. Its lovely to hear your child is inspiring you and I hope you realise at the same time you are inspiring your child. He is lucky to have such a caring, and courageous Daddy. I hope you will have many years of happy times together.

Thanks Martin, Chezza100 and Cath for your kind and up-lifting words. Becoming a dad was in every facet a struggle - both keeping my health together and bringin Felix into this world through the lottery of IVF. I like to think that we have both broken the mould - me to still be alive and Felix to be with us.

Felix means 'happy' in Greek and 'lucky' in latin, so Felix is happy-go-lucky which sums me and him up.

Through the massive ordeal to reach paternity, I now feel each hug with Felix lasts an eternity. I'll be the best dad I can be for him for as long as I can...

God Bless
Tim

Hi Tim,
I found your comments both interesting and intriguing as I have a lot in common with you. I am 41; have CF; was born and diagnosed in Southampton; have two young sons both by IVF. My life changed completely when my first son was born 8 years ago. Despite having CF and despite losing an older brother and sister to CF I never really had any concern with my life expectancy or bouts of illness. Now I have children it has become very important to me and each time my helath slips and i require IV's I find myself asking myself if this is the start of the 'slip' in my balanced state of health, as I fear not seeing my boys growing up more than anything else. It makes me feel more vulnerable than before but it also gives me the strength and commitment to fight on.
I have never commented on a blog before but felt I needed to (especially as I start home I.V's for the first time in 14 months next week).
I can fully empathise with your situation and your feelings and I wish you all the very best in life and thank you for taking the time to write your article and blog.
Keep well and take care and enjoy your son as you have earnt the joy they bring.

Hi Joe (46A),

WOW! What a coincidence! You're right when you say we have a lot in common. It must have been so tough to lose your brother and sister to CF but your sons must provide terrific solace.
I find that when I'm in need of an IV and during its duration (I'm on a course right now) that you are mentally more fragile than at any other time. It's natural for your mind to play tricks on you (your internal jedi mind-trick); that this dip in your health is the start of something worse! I go through this EVERY SINGLE TIME. Half the trick during IVs is to stay mentally strong and upbeat as your body mends itself physically with the drugs.

Good luck with your forthcoming IVs and thanks for taking time to comment - means a lot that it was my article that stirred you to write. I'm finding that a lot of CF adults go through most of their lives without opening up about their battle. I should know - up till a year ago, I was that person.

I'd be delighted if you wanted to touch base outside of this site - if so, you can find my email in the 'About me' section of my blog.

All the very best
Tim