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If you can’t beat it…..

Yesterday, 26th April should have been the London marathon. People from all over the country had been training and their plans and money raised for charity put on hold until the event can be scheduled. This has stopped most people and we have seen the 2.6 challenge where people are doing things that link in with the 26 miles of the marathon still trying to raise much needed funds for their chosen charities.

We have featured Liam McHugh many times and over and over again we have said what a true inspiration he is. Liam was, like many, supposed to be running in the London Marathon and when he realised that the race was going to be postponed he decided that he would still run the marathon but in his home town in Northern Ireland. He said he would run a marathon around Spamount in Castleberg to raise funds for the Cystic Fibrosis Trust. There was one stipulation people had to keep to social distancing guidelines if they came out to support. At the end of the race Liam was proud to announce that he had raised £33,000 for completing his marathon yesterday. Beyond this amazing achievement it means  that with the amount of money raised and adding it to his previous fundraising total it now means he has topped an absolutely incredible £266.000. The word legend gets said so many times but Liam you truly are!!

If you wish to contribute to Liam’s amazing fundraiser then click here 

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Dick Hoyt – the hero everyone needs to read about….

Team Hoyt is an American Father-Son duo who compete in Marathons and Ironman Triathlons all over the world. The thing that makes this pair unique is that the son, Rick, has Cerebral Palsy and has to be pushed or pulled along in these events by his Dad.

Together they have competed in over 1090 races together including over 30 marathons and 7 ironman triathlons. It all began in 1977 when Rick asked his father if they could run in a race together to benefit a lacrosse player at his school who had become paralysed. He wanted to prove that life went on no matter your disability. Dick Hoyt was not a runner and was 36 years old. After their first race Rick said, “Dad, when I’m running, it feels like I’m not handicapped.”After hearing his son say this he set his life ambition to get as fit as possible and to be able to allow his son to feel this freedom he has always wanted to give him.

Rick is now 78 and is still pushing his son round races with his most recent and most regular being the Boston Marathon. The pair have also had a statue placed near the start of the Boston Marathon allowing their story to continue to grow and inspire everyone. They have certainly inspired us.

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The Marathon Machine

Eliud Kipchoge has become the first athlete to run a marathon in under two hours, beating the mark by 20 seconds. The Kenyan born runner ran the 26.2 miles  in one hour 59 minutes 40 seconds in the Ineos 1:59 Challenge in Vienna, Austria on Saturday. Sadly the time will not be counted as the official Marathon World Record due to it not being in open competition and he used a team of pacemakers.

When the Kenyan crossed the line he didn’t even look out of breath, and looked like he could run another 26.2 miles. An absolutely amazing accomplishment from this unbelievable human.

Eliud said after the race, “I’m feeling good. After Roger Bannister made history, it took me another 65 years. I’ve tried but I’ve done it. This shows the positivity of sport. I want to make it a clean and interesting sport. Together when we run, we can make it a beautiful world.”

Congratulations on your achievement!!!

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Liam McHugh – still running and raising money for Cystic Fibrosis

Legend is a strong word to use and it’s probably used too often. It is often banded around in general conversation. So we have said before there are legends and there are legends. We have featured Liam McHugh on many occasions, he has been one of our Banana Chatters, we have seen how much money he has raised for The Cystic Fibrosis Trust at various stages and kept tabs on how he has done in various marathons. We keep in touch with Liam and follow how his training for the marathon goes and how his fundraising is progressing. Needless to say that the figures he talks about are eye watering and to achieve these totals is absolutely amazing.

Liam is so driven and focused and with the amounts of money he has raised must have almost singlehandedly truly made a difference to all of those with Cystic Fibrosis. He has recently announced the amount of money he raised at the London 2019 Marathon. That figure was £29,083.53. With this amount he is now on the way to raising almost £300,000 in total. We hope that when he reaches this total he will let us know and we can share that good news with everyone. This is an inspiring story where one person has made such a difference to so many people. Long may it continue Liam and those funds keep increasing and those legs keep going!

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Pleasing he says! We say absolutely incredible!

We wrote a feature earlier in the week, just after the London marathon and we congratulated two of our Banana Chatters. I sent a personal message to them both and Liam McHugh came back with the following:

I was actually very pleased with my marathon performance considering I’ve been struggling badly with heel problems for the past year or two.

On top of that I was in bed with vomiting and diarrhoea on the Thursday and Friday before the marathon. All I’d ate in two days was some tea and toast. 

3hrs 34 mins was my time and I was very happy with that under some very difficult circumstances.

My total at present for this year’s marathon has just reached the £25,000 mark today and brings my overall total to around £230,000 which is very pleasing.

Next up now is to push on to try and get the life saving drugs out there to be made available to all Cystic Fibrosis sufferers in all of the UK. We’ve been waiting way too long, approaching four years which is just not good enough. People are dying because of this and we need these drugs ASAP. 

As an aside I was looking at Facebook and there was a post from one of the volunteers at the marathon saying that she was trying to make contact with someone at the marathon whose daughter had just qualified as a doctor and who had raised amazing amounts of money. All the comments just said “It has to be Liam McHugh” and these were repeated multiple times.

What a reputation and what a legend. Liam has raised over a quarter of a million pounds and is focussed on getting life saving drugs to those with Cystic Fibrosis. We thought we should pass on the comments Liam made and remind you all of what he has achieved. We look forward to the next instalment in the Liam McHugh story.

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The only way I can describe the heat was like running for three and a half hours in a sauna..

Hi Banana Crumble!

Well what can I say. The London Marathon this year has been quite an experience.  From reaching a personal milestone of raising £200,000.00 for Cystic Fibrosis the night before the event, to participating in the hottest London Marathon in history. The only way I can describe the heat was like running for three and a half hours in a sauna. I was playing mind games with myself the whole way through, one minute I was going to walk or quit, to I’ll run until the next water station and then stop. Then my head told me that look at people fighting a battle every single day living with Cystic Fibrosis. They’re battle is continuous and that mine is only temporary. That’s what kept me going right to the finish without stopping. My toughest marathon ever.

The fight in the UK continues to try and get the drug Orkambi and the exciting pipeline deal of drugs that are coming along approved on the NHS for CF patients. We are blessed because our 26 year old daughter Rachel is on Orkambi due to clinical trials for nearly five years. It has totally transformed her life. Rachel has a Degree, Masters and later this year will become Dr. Rachel McHugh in Psychology. We are so very proud of her. We have to keep pushing at our government, NHS and Vertex the pharmaceutical company all the way to get a deal struck because people are dying as we speak who cannot get access to Orkambi. The drug is sitting on the shelf available but it’s deemed effective but too expensive. What price do you put on someone’s life ?

On Friday 22nd June we are holding protests in N.Ireland, England, Scotland and Wales to let our voices be heard that we wont stop until a deal is done. It’s also CF week and the 22nd June is also wear yellow day for CF so we are hoping to have a sea of yellow all over the four nations on that day with as much media attention as possible to highlight our very important goal. Let’s hope we can get a massive turnout on the day to show that the whole of the UK are behind us. We won’t stop until we get Orkambi approved and let’s hope it’s sooner rather than later before more lives are lost.

This photo is  me just after finishing and then meeting my wife Eleanor a few minutes later. Thanks again Banana Crumble for your tremendous support especially raising over £2000.00 for CF. We  are all so grateful.

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There are inspirational people and then there are inspirational people!!

A friend of mine lives in Manchester and on Tuesday, whilst checking my Facebook, I saw a post that she had written about a local event. I live at the opposite end of the country but something made me read on. How glad am I that I did. Since we launched Banana Crumble we have heard and written about so many inspirational stories and people, each one is absolutely amazing. However, when I read this story I was absolutely gobsmacked by the story and all the information I read about her.

Claire Lomas, up until 2007, was a chiropractor and a keen horsewoman, competing in many competitions. It was in that year at the Osberton Horse Trials that Claire was thrown from her horse in an accident where she fractured her neck, back and ribs damaging her spinal cord. She also punctured a lung and needed a tracheotomy. She had to have surgery and they put titanium rods in her back but were unable to repair the damage and she was told that she many never walk again.

Moving forward Claire is now married and has two children Maisie and Chloe. What a remarkable story! But if that isn’t remarkable enough what Claire has achieved in the years since her accident is nothing other than truely inspirational. Claire uses a “bionic suit” which she uses to help her take steps. She completed the London marathon in 2012 taking a total of 17 days raising thousands of pounds for charity along the way. The suit that she wore in 2012 has now been improved and with that and the fact that Claire herself is fitter than she was then she has taken on the challenge of the Manchester Marathon. She has now reached the halfway stage and is hoping to complete the total distance in a shorter number of days than the London Marathon. With the weather in Manchester being damp, it means that the pavement is slippery and as Claire has no feeling in her legs at all the crutches can slip so her husband literally walks behind her every step of the way to help her should she fall.

Claire was interviewed yesterday on BBC Breakfast and she was just so positive and smiley that I felt we needed to write something about her, her challenge and to mention her charities. In the interview Claire said how thankful she was that she still had use of her hands and that so many people have neck injuries which mean they lose use of both their hands and feet. She was just so positive and I feel that by telling her story we can not only inspire people with spinal injuries but help everyday people realise that you can achieve things and as we say at Banana Crumble life isn’t all doom and gloom and there is so much to be thankful for.

Since hearing about Claire and her amazing story I was struck by her words. She seems to tell it as it is, she talks about the desperate despair after her accident and wishing that she hadn’t made it through. She talks about showering and not feeling the water on her legs and is unable to tell if it is hot and cold. She talks about rebuilding her life and how far she has come in such an amazing 11 years since her accident. She says that however hard the marathons are they are nothing in comparison to rebuilding her life after the accident.

Claire met her husband Dan two years after the accident and they now have two children. Claire says her daughters inspired her as she rebuilt her life. Since Claire has found the inner strength to carry on she has thrown her herself into fundraising and it is for this reason that she was awarded an MBE. Claire has raised hundreds of thousands of pounds to help charities involved with paralysis.

We will keep following Claire’s progress and update you when she finishes in what will hopefully be a new record for her. If you want to help Claire raise funds for The Nicholls Spinal Injury Foundation and awareness of her challenge you can follow her on the following

Facebook

or to donate…

Text “LEGS 60 £5” to 70070

or visit:

http://justgiving.com/fundraising/lotsofsmallsteps

 

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I am Natalie Crawford, defying the odds of living with Cystic Fibrosis.

I am Natalie Crawford, 35 years old from Northampton, defying the odds of living with Cystic Fibrosis. I have two children, Skye-Hope, 9, and Preston, 6.

I was diagnosed with CF at the age of 28 during my pregnancy with Preston. At his 20 week scan, I was told he had meconium ileus, a bowel blockage, which is a marker for CF.

Tests confirmed that not only Preston, but also myself, had CF, a genetic, life limiting condition affecting mainly our lungs and digestive system. Further investigation led to the diagnosis of CF related liver disease in myself and more complications from my childhood misdiagnosis of asthma.

I decided that I would not allow the negative, sad and heart breaking stories shape our journey with CF as I focused on the positive and dedicated every waking moment to our health and well being. I was initially told that I would never reach the standard of fitness needed to train for a half marathon, something I strived to succeed in to inspire others.

Thankfully I am a strong willed character and let nothing stand in the way of my dreams, especially not when I knew I now had two little people looking up at me.

I trained hard and with passion, as my lung function dropped with infection after infection, I trained harder and smarter. I used nutrition and exercise as the weapons against each new bug, and with defiance I finally ran my first half marathon in May 2016.

Three half marathons followed that and I knew it was time to attempt my biggest challenge, a full marathon.

Marathon training was a true test of strength, not only physically, but mentally. The mind set required to carry you through those lonely long runs, was like dancing with the devil and as my lungs screamed at me to give in, I knew i’d come too far to quit.

In October 2017 I ran the Birmingham marathon. I ran strong, and even though it was the hardest challenge I have ever attempted, I loved every one of those 26.2 miles. I ran with enormous gratitude in my heart, feeling blessed that I had been given the opportunity to inspire so many.

I set out with the dream of being the role model my children deserved, to give them the best start in life by leading them towards the path of a healthy way of living, to teach them the importance of wellness, and to arm Preston with the tools he will carry with him as he fights CF until his cure is here.

Health is everything, some of us have to fight that little bit harder to keep it. Living with CF has made me strong, but running has given me a superpower and I will never stop chasing the next goal.

I have shared my marathon journey through a series of blogs on the CF Trust website and update through social media facebook-Natalie Crawford /Instagram-natsy1982

Watch this space as I aim to stay strong for marathon number two next year!

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My Cystic Fibrosis Fundraising Story.

I live in N. Ireland and have been fundraising for CF since my daughter was born almost 26 years ago. My main fundraiser is the London Marathon and in 2017 I raised almost £38,000 at the London Marathon. My total raised over the years is £180,000. I was awarded a BEM at the Queens new years honours list in 2015 for my services to the CF Trust. I would do anything for my only child Rachel and all living with Cystic Fibrosis to try and find a cure. I won’t stop fundraising until the job is done. Rachel has a degree and a Masters in Psychology and is in her final year of doing a PhD in the same subject. My wife Eleanor and myself are so very proud of her marvellous achievements. She’s one very special young lady.

Message from Banana Crumble – Thank you for submitting your own personal story about your fundraising for the CF Trust – truly inspirational and we wish you every success in the future with your fundraising and hope that you and your family have a very happy and more importantly healthy 2018.