Team Corr

While I have endeavoured to write a weekly blog post to ultimately raise funds and awareness for cystic fibrosis, others have been diligently preparing for a very gruelling task. Yes folks, three weeks today is the Great North Run and we have three runners raising money for the CF Trust. I would like to dedicate this blog post to each one of them and ultimately get some final sponsors before the main event!


First up is my husband, Chris Corr. Now I have mentioned before that the Corr Family possess a good running gene but it sadly bypassed Chris! To do a half marathon is certainly a challenge for him and he has never undertaken anything like this before. He has always said that he would like to do it so after Harriet’s birth and subsequent diagnosis this seemed like the right time. Due to the nature of his job he is always working away from home and this year he has had the pleasure of training in some glamorous locations around the UK.

He has trained in the beautiful Welsh countryside while working twelve hour shifts! He has ran round London mostly, and more recently up in Aberdeen. I genuinely don’t know how he has done it with such little time on his hands after working very long hours. Thanks to a lot of amazing friends and family, Chris has already reached his target for the CF Trust which leads me nicely onto our next runner: my sister in law Emily…


This is Emily’s second time running the GNR and enjoys fitness unlike her brother! Emily, who is based in London, has completed most of her training around the capital and is really looking forward to the big day. Emily is almost there with her sponsorship so anyone reading this who had planned to sponsor Chris – could you sponsor Emily instead?!

Finally, my good friend Marie, who vowed she would never ever do the Great North Run again(!) has been swayed by our little Harriet. This will be Marie’s third time running too and she has given up lots of her time to train. As a teacher, time is not something that Marie has a lot of so for her to dedicate herself to completing a half marathon really deserves a pound or two!

The Cystic Fibrosis Trust are currently working closely with the Gene Therapy Consortium who are so very close to being able to cure this disease. Only a few months ago it was announced that they have finally got gene therapy to work after thirty years of trying! This is not a cure but what they did do managed to stopped the decline in lung function which is amazing in itself. Unlike some drugs available now, gene therapy is for all CF patients, regardless of their mutation. The CF Trust need further funding to take gene therapy to the next level and find the best way to deliver it to patients to get even better results.


I simply can’t contemplate losing my daughter to this disease so please, if you read this and have anything to spare click the links below to sponsor either Emily or Marie. Huge thanks to all who helped Chris reach his target – I am sure he will raise a glass to you all once the race is over!

Click the names please to donate.

Emily

Marie

 

Harriet’s Nine Month Update

It has been a busy month for us as a family. The main event was Harriet’s christening which was a lovely affair. True to form she was an angel all day, despite me being an extremely bad CF mam by forgetting the apple puree! Before Harriet eats anything I need to give her enzymes on apple to help her get all the nutrition from her food. Thankfully after the church ceremony she slept most of the afternoon, and after that she was too busy being the centre of attention so was contented till we got home.

There had been concerns before the big day, however, as Harriet had been unwell again. Sadly, it was the same old story in that she had a cough; absolutely fine in herself but coughing a lot and again presenting with heavy, loud breathing. It had only been a just over a week since she had finished another extra course of antibiotics and I was terrified to let our team know as I knew they would probably admit her to hospital for IV’s. Not what you need with a big celebration coming up! Our nurse came out and again was concerned about the noise of her breathing and wanted her to be checked by one of the doctors at the hospital. We managed to be slotted into a Cystic Fibrosis clinic the following day, which was good as it meant we would not only see the doctor but the full team.


On seeing the doctor he immediately wanted Harriet to have a chest X-Ray to see if there was anything suspect going on. Not great as I hate having to watch her go through all of these procedures. Thankfully she is so compliant, and takes it all in her stride. We hot-footed it over to the other side of the hospital and mercifully her chest looked clear. So there we were, still left with no reason for the loud, chesty breathing. The doctor suggested that Harriet may have a floppy windpipe or very narrow airways which are a maturity thing and would right themselves as she grew bigger. Sadly, the only way to know this for certain would be to carry out a bronchoscopy under general anaesthetic. On top of that they would kill two birds with one stone as it were and keep her in hospital after the surgery for IV antibiotics. Insert sad, sad face. Thankfully we were given another (!) two week course of oral antibiotics but this would be the last chance saloon, so to speak. Fortunately after two days on the extra medicine, Harriet was fully recovered and has been fine since.


We had a scheduled follow up appointment at the clinic two weeks later and the difference was astounding! No mentions or X- Rays, surgeries or IV’s. Brilliant! In fact the team were over the moon with her progress. Harriet had gained a whopping 450g since her last visit and has now made it onto the 75th centile, something they never thought they would see! She has a great appetite and looks chubbier everyday which makes my heart sing! So very proud of her.

The only issue we are having with her at the moment is her protestation to physiotherapy. I had been doing well with it, doing it right before she went to sleep at nap time or before bed but it is just not working out well at all. We do percussion therapy which is a series of patting around her chest. The front sections are fine but when I try to do her sides she goes crazy! Our physio has suggested trying to clamp her legs with one arm (but this is tricky) or to lie her on the bed instead of on my knee and do it there. So if anyone has any other good tips do let me know!


In terms of Harriet’s development she is doing well. This month she has been clapping, pointing and saying ‘dada.’ Also, she finally cut her bottom two teeth and looks so cute! She loves her food so hopefully she will continue to gain weight as well as she has been.

I really hope that in her ten month update I don’t have to mention extra antibiotics or hospitals and that we have had a happy, quiet month!

 

 

 

 

 

Another Baby…?

Don’t get too excited, I’m not pregnant!

But having another baby is something that I think about on a daily basis. I used to joke that I would have as many as possible if I won the lottery as children are so expensive! After I had Nancy I still felt the same way, and still wanted another baby. Despite the fact I absolutely hated being pregnant as I was ill for the most part of both pregnancies I would do it all again for another child. I did find being pregnant while looking after a toddler a lot harder than now, after Harriet was born, but I don’t know whether that’s just because, despite all her CF treatments, she takes very little looking after.


As my husband and I are carriers of the faulty gene for Cystic Fibrosis we face a one in four prospect of our next baby having CF. We don’t know if our three year old is a carrier too but she has the option to find out when she is older. As well as having dieticians, physiotherapists and social workers now part of our lives we also have a genetics counsellor, and last month I went to our local centre to discuss the family genes. I had done my research, Dr Google my husband likes to call me, and had read about pre-implantation genetic diagnosis, or PGD, an advanced form of IVF. In a nutshell it’s where some really clever science people pre-test an embryo for the CF gene before implantation. Amazing, eh?


When I first read about this it really upset me. I used to think of how it would potentially make Harriet feel when she’s older that her parents chose to have another baby not like her. But after a lot of discussion and soul searching we decided that we would ask about it and maybe even get the ball rolling as the whole process can take up to eighteen months and, let’s face it, I’m not getting any younger! We would have the option to pull out at any time too so it wasn’t like we were committing fully to something.


At the appointment I learned pretty quickly that PGD would not be an option for us. Our counsellor informed us that because we already had one ‘healthy’ child we weren’t eligible for NHS funding. I was shocked to say the least as nowhere in my vast research had I come across this ruling and neither had our CF Team at the hospital. The counsellor kindly ran through our options: tests at eleven weeks pregnant with the option of termination – no thanks. Sperm or egg donation – again, no thanks. Obviously, then, a final option would be no more children which kind of made me feel like the decision had been taken away from us.

The cost of one round of IVF would be somewhere within the region of eleven thousand pounds, and even then you are not guaranteed a baby at the end of it. On the flip side though, how much would a lifetime’s worth of medicines and hospitalisations cost the NHS if our third child did have Cystic Fibrosis too? Certainly food for thought.


For us as a family the jury is still out on whether we will have another baby. We are so positive about the future for those with CF but it’s the meconium ileus I couldn’t risk. I know it only happens to one in twenty five thousand babies but don’t know whether our odds are now shorter than that having had it happen to Harriet. (Some clever person please let me know!) To put a newborn baby and the rest of our family through that initial horror of bowel surgery would be too much. Then to go through stoma closure surgery a few months down the line, again, we just couldn’t do it. Of course we could just leave it all to fate, be brave and take the risk. One in four is quite good odds I suppose but who knows?

What I do know is that we will have to come to a decision soon before I am officially over the hill!

 

 

Spineless at The Great North Museum

On Friday afternoon we were lucky enough to attend a special preview on The Great North Museum’s new exhibition, Spineless.


Nancy was well prepared with her new Explorer’s Kit complete with magnifying glass, binoculars, torch and compass! On arrival at the exhibition space we encountered an abundance of creepy crawlies. I did wonder whether a three year old little girl would be interested in this but to my surprise and relief (!) she loved it.

The museum staff were circulating with various invertebrates to look at and handle if you were brave enough! First up were a pair of stick insects; the handlers were really knowledgeable and told my daughter lots of interesting facts while I kept a happy (safe distance) with my camera!

There was a lovely little corner carpet space with chairs, bean bags and books which Nancy really loved. In fact, I had a hard job getting her to move on. I sat for quite some time listening to her bug tales!

After looking at some beautiful displays we headed for the final section of the exhibition space which housed a lovely little play area for the children. The highlight being a fantastic dress up area with custom made costumes for Spineless.

Nancy chose a butterfly costume to wear while she played on the slide, bounced on the trampoline and rode on a variety of large, plush insects. There was also a really cute enclosed area for smaller ones which was perfect for Harriet. She sat happily for ages playing with all the toys.

On the way out we spotted a millipede so, of course, Chris had to have a go and to my surprise so did Nancy – braver than me! The staff will be bringing out all the creepy crawlers to view and hold at three set times during the day when the exhibition officially opens to the public.

We also were given a copy of the specially commissioned comic for Spineless which made perfect bedtime reading after a great afternoon.

Spineless runs from August 1st until November 1st and makes for an ideal family trip out. We are very lucky in that the museum is all free so get along to see it if you can!