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.