Preparing for a Bronchoscopy

Gutted to even write that title but on Thursday this week Harriet will have her first bronchoscopy. I feel like we have narrowly avoided this procedure and hospital admissions so many times, in a way I should be glad she’s got to nineteen months without any huge interventions. The reason behind the bronchoscopy is pretty much due to back to back viruses. Harriet seems to catch one every few weeks. She has had a lingering cough that has peaked and troughed for months now and has never fully gone away, until two weeks ago. She had ONE week of being well and completely cough free and we really felt that this was it and she had turned a corner. Typically her older sister developed her first cough and cold in months and you can guess the rest. I could have cried when I went to get Harriet out of her cot one morning to find her absolutely loaded with cold.


A week on from this it is showing no signs of abating either. The brochoscopy was going to be cancelled if she stayed well which now is not going to happen. Due to the scheduled procedure she cannot be on any extra antibiotics so she is just riding this cough and cold out until Thursday. The harsh reality of having a baby with cystic fibrosis is kicking in right now. Reading through the paperwork for the procedure brought back all those awful memories of when she was a newborn and having to hand her over in the theatre waiting room (Harriet was born with meconium ileus.) Not having a clue what was going on, why my precious new baby was having to have a major operation. This time, as she is a little older, one of us will be able to stay with her until she is asleep. Who that will be, me or my husband, I don’t know. I did feel a little ashamed of myself when she had operations as a baby for sitting out of the room as I couldn’t handle watching what they were doing to her. I had a moment where I gave myself a firm talking to and vowed would never be such a wimp again and would be by her side, holding her hand through all the horrible things she has to go through.


Our day will start early as Harriet isn’t allowed anything to eat past seven am so I’m going to load her up as much as possible! Thankfully she is a pretty chilled character and I’m not expecting this side of things to cause any problems. She is only allowed water after that up until eleven am then nothing. We have to take her to hospital for midday to prepare for the procedure at around one thirty. The list runs in age order, youngest to oldest so she should be first, fingers crossed. The bronchoscopy itself only takes ten minutes. A tube will be inserted through her nose to allow the doctors from our CF team to look at the back of her throat and her lungs. Depending on what they find they will decide then and there whether she needs to be admitted to hospital for seven, ten or fourteen days for a course of intravenous antibiotics. We are to prepare for at least an overnight stay and pack our bags.


Naturally we are hoping for the best possible outcome in that they find nothing sinister and are able to give her a wash out and send her home. Despite that being the preferred outcome it wouldn’t give us any answers as to why she has picked up every single virus going and has coughed for so much of this year already. So we find ourselves caught between a rock and a hard place. Ultimately Harriet’s health is top priority so this has to be done to keep her lungs in the best shape possible no matter how difficult it may be. Not only will the procedure be distressing for her but the impact it has on our family life won’t be nice either. Harriet adores her older sister and cries for her whenever they are apart, even if they’re just in different rooms at home! To separate them for potentially two weeks is just devastating. Of course they will be allowed to visit but it’s just not the same is it?


I am trying to find positives, I really am. It is for the best but the negatives are overtaking at the minute. Watching your baby be starved, undergo a general anaesthetic then potentially have a line fitted in her arm for IV access for up to two weeks is never going to be easy to deal with. To be away from home, from family and be confined to a small room in hospital, again, not easy. The fact that everything is up in the air at the minute is hard to bear too. I like to be organised and make plans. CF seems to be good at messing with them. We have, however, planned all of our days leading up to Thursday with fun stuff to keep us busy! We will certainly make the most of these last few days as a family altogether.


Depending on what happens I am unsure how much or how little I will be able to update so please keep Harriet in your thoughts and prayers this week. Wish us luck!

To read more about cystic fibrosis and ways in which you could help click here.

Harriet’s Eighteen Month Update

The last month didn’t get off to the best start when I went all Edward Scissorhands on our little Harriet. I can’t even explain how or why, she was just there, sat still with her fringe right in her eyes so one little snip turned into something awful! Her fringe was going down into a point so logic told me I could just cut the pointed bit off…turns out I was very wrong! One snip lead to more, then more, the end result  being of a set of pictures which I am sure will come back to embarrass her at some point in her life! Poor bairn, thank goodness for hair accessories!


Health wise we were still battling with a lingering cough. One day it seemed better then the next day it was back? I really don’t understand! Again we reached a point where things escalated and we had three nights of constant coughing and no sleep. I gave up trying and we sat up watching Frozen most nights over and over just to keep her comfortable and happy. I can’t imagine what it must be like to have only a minute or so between coughs and coughing so hard you can’t sleep. So upsetting. Harriet had been on two extra courses of antibiotics so now after this latest escalation she started on Azithromycin. A few days into this I received a call from one of the nurses to tell me Harriet had grown something on her latest cough swab. Before the nurse had the chance to even speak I was in full on panic mode, expecting her to say Pseudomonas but thankfully it wasn’t! She has grown haemophilus influenzae again so needed to change antibiotics to the one that is known to kill this particular bug, fingers crossed it has!


Because Harriet’s cough had lingered for so long I was asked to take her up to the hospital to be seen by one of the doctors outside of clinic. On examination they weren’t too worried about her but her weight had dropped by 400g. I know that doesn’t sound a lot but it really gets to me. I guess I see it as a bit of a fail on my part, not trying to fatten her up enough! The upshot of the appointment was that if her cough didn’t completely clear soon then further investigations would be needed; a bronchoscopy. Persistent cough aside, she is and always remains in good spirits. She copes with everything so much better than I do!


On a lighter note, Harriet has enjoyed her usual fun packed social life! She enjoyed her cousins second birthday party, Grandad’s surprise 60th, Nancy’s dancing awards night and the fundraiser at our house just to name a few! Life still continues despite bloody CF and we won’t let it stop her doing what she wants to! At the end of the month we headed off to Scarborough for a long weekend on the coast. I love getting her to the seaside (salty air is meant to be good for her) and we are so lucky to live right next to some of the best beaches in the UK. On arrival, we couldn’t have been any closer as our caravan was perched on the cliffs! Not going to lie, the first night was a killer, it was so cold. Naturally, I then began to worry about Harriet, how imperative it was for her to get well soon and this could set us back. Thankfully the sun finally decided to come out and we ended up having a fantastic time.


Finally, she is still not walking! She can stand unaided, walk along the furniture, manoeuvre herself well on any ride on and climb a full flight of stairs! Basically she will do anything but walk. She has definitely made progress though as she will walk with someone holding her hand now, whereas before she would just scream at us as if it say I am not doing that! It’s now got to the point where we all can’t wait for her to just do it but from her point of view she can get about at some speed on her bottom so why bother?!

Next month I want to say that Harriet is cough free, didn’t have to have a bronchoscopy and is walking. We live always in hope!

If you would like to read more about Cystic Fibrosis and ways in which you could help click here.

Five Positives for Newborns with Cystic Fibrosis

At the time of your babies diagnosis you may think there are no postives about having a child with cystic fibrosis, granted there aren’t many but it really isn’t all as doom and gloom as Google will make out. Trust me, I went there, despite being told not to! One of the main reasons I started this blog was to show that happy family life does go on despite thinking your whole world has collapsed initially. I take great comfort in the following and hope it helps someone out there too.

1. Early diagnosis: Most babies are now diagnosed via the routine heel prick test within the first few weeks of life. However, this wasn’t the case for us. Our daughter was born with meconium ileus, one of the first signs of CF, this is much rarer. Early diagnosis means starting treatments earlier and therefore, preventing any damage to our little ones lungs. Screening through the heel prick test only started in 2007 so babies born before then often went a lot longer without CF being identified. Hopefully starting treatments so early will raise life expectancy.

2. Improved Treatments: I read the other day that cystic fibrosis was only discovered in the 1930’s! One of the first things to be developed was pancreatic enzymes to help sufferers digest their food properly, known today as Creon which is taken with every meal that has fat in it. Without this, patients would be severely malnourished and poorly. Advancing forms of physiotherapy to help with airway clearance mean patients are able to loosen the thick mucus in their lungs. Percussion, bubble pep, acapella and vests have all been introduced and show great benefits alongside regular exercise which is so very important too. The introduction of DNase in the late nineties was heralded as a big breakthrough as it thins and loosens the thick mucus via a nebuliser.

3. Increased life expectancy: Cystic Fibrosis was once seen as a childhood disease. So much so that adults with CF pay for their prescriptions as nobody used to survive. Life expectancy has risen so much over the last few years and can only continue to follow this trend.

4. The Cystic Fibrosis Trust: Parents of a newly diagnosed child are often pointed in the direction of the U.K.’s main charity. They are so much more than just a fundraising organisation. The help and support available to parents and to those with CF is immeasurable. They are at the forefront of pioneering technology and work so hard to fight for a life unlimited by CF for all.

5. The Future: For the first time ever, drugs are now on the market that tackle the root cause of the disease. The company who manufacture these drugs, Vertex, are now working on even better versions of these pills. Many other pharmaceutical companies are also following suit and have similar, potentially better drugs coming than the current market leader. Gene therapy is really progressing at the moment too with The GTC in the UK now proving that it can be done but there is still important work to do to perfect it.

I don’t think a day goes by when I don’t read about another company working on a potentially game changing medicine or treatment or, dare I say it, cure! I feel so lucky that my daughter has been born at this time of such great medical advancement and feel very positive about her future.

 

 

Fundraising Update

Last week I hosted my first fundraiser, ‘A Cuppa for CF.’ Even before the main event I was thankful to receive such great support in terms of donations. Big thanks have to go to Greggs who made a large donation of doughnuts. Good Brews who donated a massive rainbow cake, which was very well received! Cupcake and Co who made bespoke cupcakes in The CF Trust colours of yellow and black. My friends, family and neighbours who also supplied gorgeous baked goods. Cupcake and Co deserve a special thanks as they were truly a random act of kindness. Following a plea for help in a local parenting network, Joanne said she would donate and support my event. The company have no links to cystic fibrosis which makes it even nicer. So you all know where to go now for all your cupcake needs in the future! They also have a stall at the Harton Quays Craft Fairs so do pay their stall a visit!


Despite my jitters, the event was extremely well attended so apologies if I didn’t have the time to chat to everyone. With the help of my sister and a marvellous urn haha we managed to get teas and coffees to everyone while my auntie organised a raffle and a kind friend entertained little ones with some facepainting (Sheridan Facepainting on Facebook.) The grand total for the afternoon came in at £450! So overwhelmed and grateful for such wonderful support. Even those who couldn’t make it and still sent donations, thank you!


Another act of kindness happened this week when an old school friend also offered to help with our fundraising. Simon, is attempting to run a half marathon in under one hour and thirty minutes! Something he has never done before so this will be a true test of endurance. Simon has followed Harriet’s progress through these updates and asked if he could be of any help. Lovely stuff. This is going to be a real challenge so please click here to sponsor and support.

As always we continue to collect stamps for The Stuart Gordon Fund. Used stamps are converted into cash and fund a single research project which is showing very promising results in terms of addressing the root cause of CF. We had a huge donation recently from a local church. My dedicated auntie and uncle spent weeks trimming and posting them! Huge thank you to all involved.

My artist auntie will continue to sell her artwork at The Harton Quays Craft Fairs on the first Sunday of each month with proceeds going to The Stuart Gordon Fund too. Please pop along and show your support.


If anyone has any ideas on what we can do next or if you would like to help in any way please get in touch. My baby and so many others desperately need a cure. If you would like to read more about cystic fibrosis click here.

 

Free Children’s Life Saving Skills Class

Last week saw another strike by our Junior Doctors and guess what? They weren’t all just sat at home with a cup of tea in front of daytime television! Up and down the country a series of children’s life saving courses were organised, free of charge, ran by junior doctors who are qualified as paediatric life support providers. The course was aimed at anyone who wished to learn basic skills that could save a child’s life and being a mother of two small children, this was definitely something I wanted to be involved in!


A friend of mine managed to secure a spot for three of us in one of the hour long sessions, places were in high demand! Thankfully, children were also welcome at the course so my eighteen month old was able to tag along too. On arrival it was lovely to see that there was a whole area set up at one side of the room with mats and toys to keep little ones occupied while mums, dads, grandparents etc all set about to learn the important stuff!


We were given handouts with clear, step by step instructions on paediatric basic life support and one of the lovely doctors gave a demonstration of what we needed to do. Everyone was then split into small groups with one doctor to help us. It was a real privilege to have a doctor work with us on a one-to-one basis, taking us through each stage of child resuscitation which, of course, we all hope we never have to use. After completing all the training for babies we then moved on to what to do with a toddler or older child. There isn’t much difference in the steps apart from an older child’s head needs to be tilted further back, we were told to imagine they are ‘smelling the morning air,’ then follow the prompts on the sheet.


After we had all practised on the dummy baby and toddler we were also shown what to do in the instance of a child choking. I have found myself in this situation a few years ago when my now four year old was just turned one. She had managed to get her hands on a pound coin, pop it into her mouth and next thing she’s choking. It all happened so quickly. I hadn’t ever learned any life saving skills at this point so how I knew what to do I don’t quite know! I whacked her once on the back, that was all it took and the coin came back up out of her mouth. A parents worst nightmare. I don’t think either of us calmed down for some time afterwards! Turns out what I had done was incorrect, despite it working, so I was very glad to learn the correct steps to save a choking child. I should have placed my little girl over my knee and used the heel of my hand to deliver hard blows to the centre of the back. I had hit her in the correct spot but she had been standing and I had used more of a karate chop method (?!)


We all learned so much during our time spent with the junior doctors. They are very keen to be doing something productive, even when they had been out on the streets protesting they were still stopping people asking if they wanted to learn basic life saving skills! Brilliant! They also said they will run more courses in the future so do look out for them and book yourself a place. Ours was advertised via Facebook, so keep your eyes peeled and get in quick!

If you want to read more about the junior doctors strikes and how you can support them click one of the following:

https://you.38degrees.org.uk/petitions/petition-against-junior-doctor-wage-cuts-in-england
https://www.change.org/p/british-medical-association-support-a-strike-for-junior-doctors

A Cuppa For CF

Just a brief update from me as I am running on approximately an hours sleep for the week! This Thursday is my fundraiser for The Cystic Fibrosis Trust, ‘A Cuppa For CF.’ I really hope lots of people come, everyone is welcome, bring your children, grannies etc! My house will be open from 12pm-4pm for everyone to come, have a cup of tea, a cake and a catch up. I have been lucky to have had a very generous donation from Greggs and a large rainbow cake from Goodbrews Cafe, Gateshead so very big thank you to those involved.


I have also had some kind offers of bakes from friends and neighbours but I would still love to get a special CF related cake made. If anyone knows a talented baker who would like to show off their skills I would love to hear from you. Something to really stand out at the event would be amazing, a big yellow cake or a set of cupcakes with yellow icing, yellow being the colour of The Cystic Fibrosis Trust.


For anyone reading this who doesn’t know, my eighteen month old daughter has cystic fibrosis. A life shortening, genetic condition that affects many organs. As a mother, I can’t face the prospect of outliving my beautiful little girl so we are doing all we can to raise funds for new treatments and potential cures. Any support would be so gratefully received.


Lastly, another one for everyone local to me. The Harton Quays Craft Market is starting up again next Sunday, 1st May 10.30am- 3pm. My very lovely and very talented Auntie will be there for each one selling her artwork for The Stuart Gordon Fund. This charity funds one single, very promising project into a life changing treatment for cystic fibrois sufferers. Please if you go along to the market, have a look at her wonderful stall.

If you would like to learn more about cystic fibrosis and other ways you could help please click https://www.cysticfibrosis.org.uk

Harriet’s Seventeen Month Update

I feel like Harriet has changed so very much over the last few weeks so now is a good time to slot in her seventeen month update.

The beginning of the month was tough. Probably the hardest we have been through yet, aside from getting her CF diagnosis and bowel surgeries. She had, as usual, just recovered from a cold when she caught some truly awful virus. After three nights of no sleep we were both really struggling. I had even given up trying to get her back to sleep as she was coughing so much I just let her sit up and watch Peppa Pig. Naturally I felt so guilty but seeing her suffer just wasn’t worth it, and as long as she was content that was all that mattered until she recovered!

On the fourth night she went down to sleep fairly quickly which lead me to think she was now over the worst and would sleep for Britain. I couldn’t have been more wrong! She woke up coughing after an hour but the cough just sounded horrific. When our nurse had seen and heard her earlier that day she suspected croup which I have never experienced with my eldest so really had no idea how bad it was. After twenty minutes of coughing so much that it seemed like she couldn’t breathe, I decided to take her to Accident & Emergency. I just wanted someone to help her as I had never seen her in such distress. Cue the rushing around, packing bags just in case, and telephoning my parents to come down to look after Nancy. Such a panic.


Typically, on the way to the hospital, the coughing eased a little and she dozed off in the car! As Harriet has cystic fibrosis we have an open access pass to the hospital so we can got straight through to A&E. Pity it didn’t fast track us to see a doctor! We ended up sitting for four hours, during which Harriet had a great time watching Peppa (again!), playing with toys and trying to generally cause havoc. Did not cough once. When we were seen, the doctors thought she had tonsillitis and said the course of treatment she was on already would cover her for that. In hindsight I probably shouldn’t have taken her, but at the time it was so frightening I just wanted someone to tell me she was okay. Sleep deprivation probably didn’t help either!

We are very lucky that our nurse was able to pop in again the following day to see Harriet after letting them know about our late night escapades, and she suggested slotting her into a CF clinic the following day. By this point I was so exhausted and also suffering from the same virus that I was glad to have my husband come home to take her! The clinic went well, she was sent for an X Ray which came back fine, and the specialist confirmed she had a croup type virus which could take some time to clear. Even now, three weeks on, she still has a lingering cough so we are on watch and wait duty.

Easter must have suited Harriet as at the clinic this week she had gained more weight in just three weeks and is now 10.89kg. No gains length wise but she remains on the 75th centile for both which is so brilliant! What else is brilliant is that she finally stood up! She had been doing it on the bed for a while but yet to attempt on the hard floor – she’s not daft! The doctor we spoke to this week said that if she has now stood up we should expect the walking to start within the next two weeks! I don’t know if I’m prepared for this! She has blown me away with her speech too and it seems she has gone from saying a handful of words to then suddenly be saying all sorts! The Disney film Frozen is her other obsession along with Peppa and she desperately tries to sing ‘Let It Go!’ So cute!


Despite a rotten start, I feel like Harriet has really blossomed over the last two weeks. She has such a big personality! Again, this just fuels us even more to continue to raise funds and awareness for CF in the hope that one day CF  will stand for cure found.

If you would like to learn more about cystic fibrosis and ways in which you could help please click here.

 

Ten Signs You’re A CF Parent

Disclaimer: my daughter is only eighteen months old and on minimal meds therefore I am relatively new to being a CF parent and these mainly apply to babies.

So life has changed for us in a big way. I knew nothing about cystic fibrosis before our second daughter was born and I’m busy fumbling my way through a steep learning curve. CF is kind of complex, right?! In no way do I mean to trivialise the utter evil that is CF but I do feel my new-found parent behaviour mildly amusing from time to time, and thought I would share some of the things that make me laugh in amongst the sadness of dealing with this disease.

You know you’re a CF parent when….

 

1. At the early appointments you find yourself staring at every child around wondering whether they have CF too. People with CF are unable to meet because of the risk of cross infection so patients attend a different clinic depending on their health and are seated well away from each other until they can be allocated a private room. I used to think, ‘well, he/she looks good’, trying to guess their CF status. Now, looking back, I realise that I will never see those who are ill as they would not be at a routine clinic and would be on a ward, admitted to hospital. Sad.

2. You join EVERY Facebook support group going. I am the type of person who likes to know everything and have a real fear of missing something so the best way, for me, is to see it all. The good and bad. I have CF mam friends who are only in one or two groups as it can be very harrowing seeing the harsh reality of CF day in, day out, but I just can’t not know. My husband has just signed up for The Great North Run again and on the information he received it was suggested he join the closed Facebook group for runners. Off he went to join it and he was shocked to find he had friend already in there. Yep, me! Ha!

3. You have a full cupboard of medicines, tablets and apple purée. Whenever a local supermarket has cheaper apple purée pouches in stock I just go and empty the shelves. I don’t give it much thought and sweep the lot into my trolley but probably get some funny looks! People with CF have to take digestive enzymes called Creon with everything they eat – if it has fat in it – as it affects the pancreas as well as lungs. Babies naturally cannot swallow pills so we have to empty the contents of capsules onto a spoonful of apple purée.


4. You visit the local pharmacy more than your parents’ house. I ring them at least once a week, send them Christmas cards and give them thank you gifts. Thankfully we have a brilliant chemist so that side of CF tends to run smoothly unless the doctor’s receptionist gets involved! You all know what I mean… The amount of medication varies from patient to patient as CF affects each individual differently. Our daughter takes nine syringes of medicines per day along with approximately sixteen creon capsules and half an omeprazole capsule twice per day.


5. You get unbelievably chuffed when you find a healthy food or snack that is high in fat. Again, clear the shelves until baby decides they don’t like them anymore. Also spotting something that looks great in the supermarket only to be disappointed by the low fat content. Every cystic fibrosis team has a dietician attached and a lot of emphasis is placed on weight gain. We have been advised to follow a high fat, high calorie diet like all other CF patients.

6. You totally regret that you didn’t pay more attention in science class at school. I now spend a lot of my time reading medical papers, giving up and asking my husband to read them then give me the dummy’s version! There is currently no cure for cystic fibrosis and patients are lucky to reach thirty years of age. Life expectancy is continuing to go up and up with the development of new treatments which is why fundraising is so important to us.


7. You Google ‘cure for cystic fibrosis.’ You would think being a part of 43898877733333330000000000 Facebook groups would have all bases covered for potential new treatments and possible cures. Nope. Still like a good Google every now and then. No stone unturned and all that!

8. You pull some stealth moves when you hear someone nearby cough. In fact, I bet some CF mams can differentiate between cough types on one hearing. Cough detectives if you like; a finely tuned ear knowing whether it’s safe to stay put or subtly move as far away as possible. Coughs and colds are par for the course with little ones but can be so damaging for someone with cystic fibrosis so if you have a cold please keep away or don’t be offended if we keep our distance!

9. You find creon granules EVERYWHERE. In your bed, in between the floorboards, in your bra (breastfeeders you know it!) Roll on the day your baby can swallow capsules!

10. Finally, you start a blog. Enough said.

If you would like to learn more about cystic fibrosis and ways in which you can help click here.

 

Fundraising Update and Big Thanks!

My first baby was a terrible sleeper, my second is going the same way so I have a lot of thinking time in the small hours. I keep thinking, ‘what else can I do? How can I raise more money to help cure cystic fibrosis?’ I never ever want to get to the stage where I have to say I could have done more. My family on the other hand could not do any more. They are fantastic and will keep going and keep raising to help Harriet and all CF patients. We have already raised somewhere in the region of ten thousand pounds since our little girl was born almost eighteen months ago. Not long after we were discharged from hospital (Harriet was born with meconium ileus so required surgery) my Dad rang me one evening to tell me to put Channel 4 News on. Low and behold there was someone saying they believed they had found a cure for cystic fibrosis! At first we began to question whether this kind of news item appeared often. We knew virtually nothing about CF till our second daughter was born, and would not be looking for news on it. Well, eighteen months down the line we continue to raise funds for The Stuart Gordon Fund who support Dr Mehta and his colleagues with their work. For the full story click here.

To raise money we have held quiz nights, coffee mornings, sold arts and crafts and collected stamps, to name a few. Recently my family organised another brilliant quiz night which raised £1000! Not only do we owe them a million thank yous, putting a superb quiz together, I’m sure, is no easy task! We would like to thank all of the people, companies and businesses who donated amazing prizes for the raffle. So a huge thanks must go to The Barbour Foundation for donating the first prize (which was a voucher for a jacket worth £89.95!) and Fenwick of Newcastle for a gift hamper. The following all generously gifted vouchers: Beamish Museum, Pickings, Customs House, Janice Egglestone, No. 4, South Tyneside Kettlebells and Taz Mahal. Also to Durham County Cricket Club for the top and Lynne Croft at Thrives Atoms. For all those people who brought things along to be raffled, gift sets, bottles etc thank you! And just thank you for coming and supporting us – even those people who couldn’t make it and still made a donation, thank you!  Finally we couldn’t have done it without the free use of the room at Boldon Cricket Club and to the band for keeping everyone entertained. If I’ve missed anyone out here’s a big THANK YOU! You are all amazing.


Aside from monetary donations we continue to collect stamps and recently it was announced that the used stamps appeal has raised £1,635.58! Please keep collecting, asking workplaces or, if you’re like my Dad, ask anyone you come into contact with! He has chemists, car dealerships, post offices, supermarkets and anywhere else you can think of keeping their stamps for us! Harriet is so lucky to have so many people who just idolise her and will do anything to help. Download a poster here.


We also fundraise for The Cystic Fibrosis Trust who fund lots of different projects in the UK. My husband, sister-in-law and friends have all ran The Great North Run for the trust and will continue to do so. We also have one new recruit to Team Corr this year: my best friend’s husband whose donation page I will link below. Please consider sponsoring him or why not sign up yourself? Click here for details! The other JustGiving pages have not been set up yet but I’ll link them in future posts.

The CF Trust have a ‘wear yellow’ day each year and this year it is on 1st July. Would anyone consider asking at work or school whether they could have a wear yellow day? Like a non uniform day, pay a pound and potentially raise lots and lots of money! If a few schools could support this we could make a huge difference. PLEASE!!!!!


Finally, I am organising a a small fundraiser of my own (eeeek!) at my house. ‘A Cuppa for CF’ will take place on Thursday 28th April from 12pm onwards. Obviously friends, family and neighbours are all welcome. Now I can just about manage to make a cup of tea or coffee but anyone who went to school with me and happened to witness the weekly disasters I produced in Home Economics knows that I am no baker! So if anyone could make a little something (or a big something!) that would be great! Ideally a local baking company will make me a huge ‘Cure CF’ cake! Dream big! Again, any help with this would be greatly appreciated and hope to see lots of people there.

If you would like to sponsor Adam click here.

If you would like to learn more about Cystic Fibrosis click here.

 

 

The Fight for Precision Medicines Continues.

So this week NICE announced its decision NOT to recommend the gene specific medication Orkambi to the NHS in England. Orkambi is the first drug ever to be manufactured to target the root cause of Cystic Fibrosis. Up until now all treatments have been simply treating the symptoms, not actually changing how cells work inside a CF patient’s body. It’s incredible that one pill can attempt to do that and equally incredible that my daughter has been born at a revolutionary time with precision medicines. However, because this drug is one of a kind, it comes with a fairly hefty price tag. This drug is already available and in use in the USA, Australia, France and Germany. Not. Fair.


I often think to myself, ‘well, it’s ok, my daughter is way too young to take anything like this anyway and by the time she’s six an even better version of this pill will be readily accessible for her’. However, what about all the other, older ones with CF who are just sitting waiting, lung function slowly declining? Results with Orkambi have not been amazing. From all the testimonies I have read, it seems to work fantastically for some – completely changing their lives. They can live life unlimited with CF.  On the flip side I have read personal stories of it not doing anything for a patient at all. But how can someone take away the right to give it a go, take away someone’s right to a potential full life? Orkambi has been shown to stabilise lung function (I’ll happily take that) and reduce the need for frequent hospital admissions for IV antibiotics, therefore, saving money.


In a previous post, linked here, you can read just how good this drug has been for a CF patient. Why should some countries have access and some not? Are their lives more valuable than ours? I truly believe that this drug will eventually be approved but at the cost of how many lives?

How can you help? You can click here to email your local MP. It takes all of two minutes. I know lots of people local to me will be bombarding the inbox of our local member of Parliament but what would be great would be people who read this living in different areas bringing this to the attention of their MP. Let’s keep my girl always as happy as she is now!


If you would like to read more about Cystic Fibrosis and find out other ways you can help click here.