Inspirational Angels · Questioning the World

Give Away & Page Take Over

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Join me tonight 9pm UK time as I take over the #Leeds2018 #HourglassEvents page click the link and join in advance http://ow.ly/McOi308JscK

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Four years ago this incredibly brave little man lost his fight against cancer, he left an army of followers all heart broken by his loss and devastated for his family, I wrote Voices Across The Void to honour his memory and to raise awareness and funds for the charity set up in his name Cords4LifeUK, I said Iwould never give this book away free because of that but today and tomorrow to honour him and this family I am with the hope if you like it you will leave a review, spread the word and help make cord donation something offered to all new mums so they may help save a life or at the very least give those precious extra few months cells from a donated cord gave Charlie with his family. https://www.amazon.co.uk/Voices-Across-Void-Pa…/…/B01GZ5NFPU

 

Inspirational Angels

Birthday Wishes

Today is a very hard day for some friends of mine you see today would have been little Charlie’s 3rd birthday.  I will not pretend to know how you get up each morning and carry on following the loss of a child much less how you handle the extra special days knowing your child will not be there to open presents or blow out candles.  Charlie’s legacy is to hopefully bring about changes which will reduce the number of parents experiencing what Fi and Joey are going through today, I read messages from his big sister Ellie and my heart breaks afresh that she too should have to deal with this pain at such a young age.  So for today they asked that we all wear purple in his honour (his favourite colour) there really is nothing more to be said other than I am…

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Inspirational Angels

The Second of My Inspirational Angels Series – Hayley Leon

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Some Angels are only loaned to us for such a short time – I wrote this recently on someone’s blog (they know who they are) but it really is true some Angels are destined to spend only a short time on Earth others to remain and walk amongst us and some inspire others to be transformed.  As I have helped trying to promote Charlie’s Cause I have been amazed by some of the amazingly strong and compassionate people I have come in contact with.  There are events in life which if the strike will either make you or break you these people have stood up to adversity looked it firmly in the face and fought not only for themselves but for others, when most would curl up in self pity they have reached out to help others, they are each and every one of them truly inspirational and over the next few weeks I would like to introduce you to just a few of them.

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I would like you all to meet Hayley Leon, her partner Lee and there son Jacob, though it was Jacob’s fight, it is the families journey and subsequent decision to become fundraisers extraordinaire that has led to their inclusion here.  Not only are they raising funds to support the unit that saved their son’s life but Hayley has taken an active role in helping to promote the petition for Charlie’s cause Cords4Life UK as well.  Recently Jacobs Journey launched their own website and Facebook page to compliment their twitter campaign.

First Hayley let me say thank you for agreeing to be interviewed and letting me ask lots of emotional questions which you have probably answered a hundred times before.

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1) Jacobs Journey is a very apt name for your cause given the very real journey you have all been on with Jacob, can you tell us how it began?

Lee; When Jacob was 2 weeks old he became very poorly and began screaming and vomiting, we took him to Coventry University Hospital where they completed some basic tests and believed he had gastroenteritis, we were not happy with the results as Jacob was completely out of character appearing to be suffering with extreme pain, he would feed on milk, then vomit and start screaming, we couldn’t comfort him and it was very upsetting.
We noticed Jacob’s eyes were not responding normally as they appeared to be fixed in one corner, we raised this with the nurse who contacted a specialist (Dr Morgan) who checked his eyes.
Dr Morgan then immediately arranged for a CT Scan to be completed on Jacob’s head, we were now feeling very worried, one minute we were told he had an upset stomach and now he was going to have a CT scan of his brain? The results came back and Dr Morgan explain that Jacob had a large mass within his brain believed to be caused by a bleed.
Obviously we broke down, when you hear of bleeds to the brain you automatically think of the worst, we were completely unable to help our son or even comfort him.
Dr Morgan arranged for Jacob to be rushed to Birmingham Children’s Hospital, we had to wait while a specialist ambulance arrived, by this time our family was at the hospital and we were breaking the news to them, this was completely heartbreaking and would be the start of a journey that would change our lives forever.
The specialist ambulance arrived and Jacob had to be place onto a life support machine for the journey, this looked like an incubation chamber full of wires, tubes and equipment, we followed the ambulance to Birmingham, we were directed to ICU (Intensive Care Unit) and we had to wait while the Surgeon on duty reviewed his scans and symptoms, Mr Rodrigues then came to speak to us explaining that Jacob needed brain surgery to remove the clot and relieve the pressure within the brain that is causing the pain, we had to sign a consent form before the surgery could take place, there was a real risk of death from the operation but a certain risk of death without it, not really a choice so we both signed and put all of our hope into a man we didn’t know.
Jacob was prepared for surgery, we were allowed to see him quickly before he was taken into theatre, we did not want it to be a goodbye but it had that feeling to it, we waited for several hours and then we were told the surgery was complete and Jacob was still with us, this was the first hurdle in many that Jacob will overcome, we had to wait again for them to take Jacob back to ICU and place him on life support, he was unable to breath for himself and he was incredibly weak.
Jacob was in ICU for 4 days but this felt longer, after 3 days we were given accommodation in the Hospital although Hayley didn’t leave Jacobs side the whole time, our Family all took turns to visit and the support from them and friends was fantastic, we were completely torn away from our normal lives as nothing else seemed to matter.
The team at Birmingham were great, everyday in ICU there would be a different nurse looking after Jacob, we sat and watched as they constantly attended to him, feeding him through tubes and tracking his progress every hour of the day and night.
After 3 days Jacob was well enough to start breathing for himself, this was a really upsetting time as it was clear Jacob was not happy and was struggling to breath on his own, he looked confused to what was happening and it was devastating to watch him unable to pick him up and comfort him.
Jacob was taken to the Neonatel ward , this ward specialises in post ICU care and there was now 2 nurses to 4 children, we got to spend some more private time with Jacob and we able to starting picking him up briefly and feeding him normally, the care here was still fantastic and the nurses would respond to every cry. He stayed here for 8 days, in that time he had his drain removed from his head and physio started. On day 8 his surgeon was happy for us to take him home , we on the other hand were petrified, we were so scared as there was also a chance of a second bleed. Mr Rodrigues didn’t know weather he had got all of the abnormal blood vessels because it was quite deep in Jacobs brain. We were sent home with weekly appointments at the hospital and for a nurse to come twice weekly to measure Jacobs head for any swelling. He also started regular physio at home. For the next 10 months our lives were consumed with Hospital visits,scans, doctors appointments, physio , twice weekly nurse visits and developmental checks.

309667_10150322789781245_116152128_n2) I know it will be hard to put into words but if you could try to explain how you felt seeing him lying on the life support machinery

Hayley; Seeing Jacob on life support machine is an image that will never leave my mind. In a blink of an eye my baby was taken away from his side room after being treated for a stomach bug and taken to a HDU unit where the KIDS team from BCH arrived with all their equipment . There was wires every where , a big tube in his mouth , tubes up his nose. We were briefly allowed to check in on him but we had to leave them to do their job. Myself and Lee just stared blankly at each other. We always joked that we had so much bad luck in our lives but this was something else. Why was this happening to our baby? Was it something i had done? We started to question everything! Dr Morgan (Jacobs Paediatric Consultant) was fantastic. She kept saying Jacob was having a little rest , he wasn’t in pain and the KIDS team would make sure he got to BCH safely. It was some kind of nightmare we were in! Lee took it really bad. Because he had only taken a weeks paternity he was very upset that he hadn’t spent enough time with him. I was trying to hold it altogether , even though I just wanted to hide in a room and cry and cry and cry!

3) Jacob has two big brothers who I am guessing were told by everybody when he was born to look after their little brother how did they cope not only with his illness but with the fact that it obviously meant a lot of time spent away from you while you were at the hospital?

Hayley; When Jacob fell ill Callum was 9 and Jack was 4. We had fantastic support from our families who all took time off to look after them and to make sure their day to day life wasn’t interfered with . We didn’t want them to worry. Callum was a bit wary that something was not right but Jack didn’t have a clue as he was very young. We didn’t want them to visit Jacob in PICU because the whole experience was not nice for anyone who came to that ward . Lots of babies and small children hooked up to ventilators was heart breaking and I kept my children away from that. They did however come to visit Jacob for a few hours when he had his drain removed. We were able to go for a walk around the hospital and grab something to eat with them. They enjoyed the visit. Callum now knows that Jacob was very poorly and has since wrote an autobiography on his short life so far.
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4) I obviously got to know you through Charlie’s couragous battle against cancer, how did you become involved with Cords4Life UK?

Hayley; I first found out about Charlie when we set up Jacobs Facebook group. I remember searching for Birmingham Children’s Hospital and his page popped up and I have followed him ever since. There was something quite special about this little boy. I loved looking through his gorgeous smiley pictures and his family are quite simply amazing! I got to know Joey through twitter and arranged to meet them all in hospital while Charlie was having his trial drug to drop of some presents for the family . Charlie was gorgeous, and Fiona and Joey were lovely and I was very honoured that they let us visit. Jacob had a wail of a time eating biscuits and being cheeky! It is a time I will never forget as Charlie and his family changed my outlook on life.
 
5) I would imagine that you got to know a lot of parents during your stay at Birmingham Children’s Hospital many of whom won’t have been as lucky as you have been, have you ever felt I guess what would be termed as survivor guilt?

Hayley; We have never felt guilty because Jacob survived , in fact I have never even thought about this before. Myself and Lee prayed so hard for Jacob on the night of his op and we hoped our loved ones above were listening to us because we didn’t want him to leave. My Grandma Died 7 days before Jacob fell ill and my family always say she left so Jacob could stay and I will always believe this.

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6) I have gotten to know you well enough to become Facebook friends and have seen how well Jacob is doing but can you tell everyone where he is on terms of treatment now, and his prognosis for the future?

Hayley; Jacobs prognosis for the future is excellent. He has some left sided weakness due to the bleed but its not anything that anyone would notice. Its only something he would notice himself as he got older. He has another scan in July to check his brain and another developmental check to rule out mild cerebral palsy. The future is very bright for Jacob he is a very determined little boy!

300615_10150322794196245_149882415_n7) Do you ever worry that it could come back given how rapidly it struck before?

Hayley; Jacobs bleed was caused by a group of malformed blood vessels in his brain which burst as they became weakened by the blood flow. His last scan showed that Jacob had no AVM in his brain and that everything was normal. We are certain that this will never happen again but he will have 2 yearly scans to double check.
8) What made you decide to fundraise for the hospital rather than merely send a thankyou card?  And how would you counter those that argue we already pay for the NHS?

Hayley; When we came home from hospital , we set up a Facebook page for Jacob so we could raise money for Ward 10. No one knows if their child will ever need help from their local hospital and we all pray that this will never be the case, but we would like to know that if there was ever a need, they have the equipment, money and knowledge to be able to treat babies and children in the best possible way. Fundraising for Birmingham Children’s Hospital has become my hobby and passion and along with my friends and family we will continue to help and hold events to raise as much money as possible. Some people will just send a thank you card but lots of people want to give something back, how can you ever repay someone who saved your child’s life! The only way you can do this is to raise funds and make the hospital the best it can be.

541592_10151417731666245_725846638_n9)  You were honoured as one of the hundred heroes for your fundraising last year, how did that feel?

Hayley; We were over the moon when we received our award , it was lovely to know that the hospital wanted to show their appreciation. The night was filled with amazing stories of brave people who were fundraising to say thank you for all the help and support the hospital gives them.
46766_10151404138736245_380331365_n10) Your next event is your charity night can you tell us a little about that and where people can watch out for further events

Hayley; We are holding a charity night at the Willenhall Social Club Coventry on Saturday 30th March from 7pm We have some fantastic entertainment , live music, Children’s entertainer , Peppa Pig and George, Mickey and Minnie mouse, face painting , Raffle and a DJ! Tickets £5 adults £3 child. The amount of people helping me out with their time and generosity is amazing! We will also auction off a signed Coventry city shirt, a Coventry Blaze signed goalie stick , a signed photo of Man Utd Player Ashley Young and a signed Photo of Liverpool Player Luis Suarez. This will be taking place on Jacobs Facebook group https://www.facebook.com/groups/Jacobsjourney/ 25th March til 8th April! You can follow Jacob on his face group page which is listed above or on twitter @jacobs__journey for further events . Jacob also has a webpage http://jacobs–journey.webs.com/

I just want to say a huge thank you to Hayley and Lee for sharing their story and if you want to bid on anything or even maybe if any of your writers would like to sign a book and donate it to a good cause here are the links again.

Anyone wanting to find out more about how they can help Haley raise funds please check out the web page Jacob’s Journey follow on Twitter @Jacobs__Journey or on Face book Jacobs Journey

Inspirational Angels

The First of My Inspirational Angels Series – Claire Halliwell

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Some Angels are only loaned to us for such a short time – I wrote this recently on someone’s blog (they know who they are) but it really is true some Angels are destined to spend only a short time on Earth others to remain and walk amongst us and some inspire others to be transformed.  As I have helped trying to promote Charlie’s Cause I have been amazed by some of the amazingly strong and compassionate people I have come in contact with.  There are events in life which if the strike will either make you or break you these people have stood up to adversity looked it firmly in the face and fought not only for themselves but for others, when most would curl up in self pity they have reached out to help others, they are each and every one of them truly inspirational and over the next few weeks I would like to introduce you to just a few of them.

I am personally really proud to introduce Claire Halliwell to you, as most of you are aware I have followed Charlie’s journey from the start because of my friendship online with his Great Uncle but since Charlie’s passing #CharliesArmy has grown unbelievably and standing proud at the front has been a remarkable lady who I am now proud to call a friend. so Claire I would like you to meet my readers and readers I would like to introduce you to Claire…

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1) Claire you have become the spokesperson for the family in some ways while they deal with coming to terms with the tragic loss of Charlie, how did you get involved in with Charlie’s journey?

I read about Charlie’s story in the national news papers. I wanted to help but wasn’t sure how to contact the family. Then I came across Charlie on Facebook just as the Aurora Kinase trial failed and I knew I had to do something to help.

2) You have designed the website for Charlie’s family what is your hope it can achieve?

I hope that people in the same position as Charlie’s family can find solace in the fact that other people are going through the same thing and are fighting for their loved ones too. I hope that families can turn to the website’s resources page when doctors have exhausted all available treatments to help them find orphan drugs, experimental drugs, clinics over seas and clinical trials.

3) You are also behind the petition, though I know a few asked about one, you were the one who stepped forward and took responsibility for organising it can you tell anyone who has not heard about it (though how they missed it I have no idea lol) what the petition aims to do.

During his treatment for Acute Myeloic Leukaemia, Charlie received the blood from an umbilical cord from a lady in the USA. The UK stocks of cord blood arevery low. It is upsetting that a country which is pioneering in so many areas is so slow on the uptake of storing cord blood. Cord blood can be used to treat many many illnesses and is being researched to help with many more. Those illnesses include: Parkinson’s, Alzheimer’s, Leukaemia, Lymphoma, Myeloma,Aplastic Anemia, Neuroblastoma, Children’s Cancer, Diabetes, Multiple Sclerosis, Stroke, Cerebral Palsy. Just think how many people are affected by these illnesses, not just those with them but their carers and their family and friends who are all indirectly affected. The petition aims to increase awareness amongst pregnant women so they can make an informed decision about ubc (umbilical cord blood) donation, something usually thrown away as hazardous waste which can save the life of another. Not only does the petition aim to increase awareness amongst pregnant women but it also aims for every major hospital to have the facilities to store ubc on a temporary basis while it can be transferred to a regional centre. If the UK had good stocks of ubc then those who need it could save valuable time for those who need to receive it who are often in the most vulnarable of positions and can not afford the loss of time in order to receive treatment.

4) You have also helped organise the twitter campaign #CharliesArmy #CharliesCause to promote the petition and as part of that I know we have had had some successes and some celebs we have gone right off naming no names lol but if you could have a dream celeb to get on board with this campaign who would it be?

Ooooh that’s a hard one. There are so many influential people out there. Personally, I would like someone who felt passionately about what we are trying to achieve. Gary Lineker’s son had leukaemia as a baby but then there are lots of celebrity mum’s who feel equally as passionate. Linda Robson has tweeted our petition and has said she is on the Anthony Nolan register, causes like this are close to her heart. It would be wonderful if she would like to promote the petition with us. I think if you are passionate about something people can feel it and want to get involved so my dream celeb would be the celebrity who really believes in what we are trying to do. If any celebrities would like to get involved they can contact us on twitter at @CordsforLife

5) Is there anything else you would like my readers to know?

Charlie has been the inspiration for this petition, his family have created a cause, which is pending registered charity status, called Cords4Life UK. I want people to know that the cause is there and does a wonderful job of creating awareness.
I also want people to know these facts about cord blood donation taken from Anthony Nolan:
It’s a risk free procedure that does not interfere with the delivery of your baby in any way
On average, every year 1 in 100 cord units will be used for transplantation compared to 1 in 1000 registered adult donors
80% of transplant requests would be met if the UK saved just 50,000 cord blood units. In the UK alone last year, 65,000 litres of cord blood were thrown away!
Up to 70% of people who need bone marrow transplants will not find a match. Banking stem cells improves those odds.

If your readers would like to sign the petition they need to go here: http://epetitions.direct.gov.uk/petitions/45622
HM Government E Petitions will send them an email to confirm they would like to take part – it is esssential that the click the link within this email to confirm their signature.

Thanks for the interview and the opportunity to spread awareness!

You are most welcome anyone who would like to read more about Charlie’s Journey or knows anyone who may need to access the resources page which has links to clinical trials all over the world can find it here or can find out more on his Facebook page here

Charlie Harris-Beard

25/06/10 – 08/02/13

Gone But Never Forgotten

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