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challenge 50

Marie is completing the Challenge 50

Running 50k This March!

Each Mile run is dedicated to babies affected by Necrotising Enterocolitis (NEC)

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Mile 1 'Noah'

Mile 1 dedicated to Noah, Born at 27 weeks weighing 2Ib and developed NEC at 2 weeks old resulting in  life saving surgery and a stoma. Hes now 3 1/2  and tpn dependent and had multiple figures life saving operations on his intestines due to more complications 💜 a miracle xx

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Mile 3 'REECE'

Mile 3 dedicated to Reece
Reece Tiger was born at 23 weeks and 1 day, weighing 1lb 5oz. He developed NEC at 4 weeks old and had life saving surgery, resulting in a him having a stoma. This was reversed after 4 months before he came home. Five weeks later he had a bowel obstruction and perforation resulting in more surgery and a stoma again, which was reversed after 3 months. He’s now 13 years old 

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Mile 5 'LEO'

Mile 5 remembering sweet Leo

We want a #WorldWithoutNEC

This is my little boy Leo. He was born at 29 weeks weighing 760g. At 16 days old I had a call from the hospital asking me to come in to consent to surgery as Leo was diagnosed with nec, they discovered widespread NEC so sadly they couldn’t save Leo. Leo was put on life support and was moved to a side room so we could spend some time with him before the life support was turned off. The life support was turned off and Leo passed away at 5:44am 17 days old. It’s his 2nd birthday next week

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Mile 7 'CHARLIE'

Mile 7 is dedicated to Charlie.
His mummy. Claire Radford joined us a volunteer and then trustee she is vice chair and I couldn’t do it without her!! Charlie is a fellow short bowel and PN warrior!

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Mile 9 'Ariel'

Mile 9 dedicated to Ariel. 
This is Ariel, born at 24+6 within two weeks of life they did a drain to see if she would use the bathroom. Two days later she was about to pass a bowel and her bowel went everywhere. They diagnosed her with NEC and with emergency surgery they were able to save her intestines and ever since then she’s been stable and growing. Praying she has her surgery soon and it goes smoothly and we get to bring miss Ariel home to meet her big brother.

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Mile 11 'RILEY'

Mile 11 dedicated to Riley. 
This is Riley, he was born 35+6.
We sadly lost his twin at 6weeks gestation.
My waters were leaking from 28wks gestation. 
When Riley was born he needed urgent glucose as he had little to no sugar in his blood. He was severely jaundiced so needed triple phototherapy. He couldn’t keep any fluid or milk down and was in a lot of pain. 3hrs after birth, when the dr came on shift he asked why no one had told a dr about the swelling in his stomach. He had an urgent X-ray and we found out that he had short bowel syndrome,and a ruptured bowel! We also discovered he had NEC. He was queried Cystic fibrosis and had numerous tests as some were positive others negative, after 2yrs he got the all clear. He also has damage to the deep white matter of his brain but he’s here and he takes everything in his stride xx

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Mile 13 'LOGAN'

Mile 13 dedicated to Logan. 
This is Logan. He was born 33 weeks 3lb 1oz. He developed NEC at 2 days old. Had his first emergency surgery on day 4 (50/50 if he’d make it off the table) which saved his life and resulted in a stoma. A series of bad luck led to a severe blockage and he had his second emergency surgery at 1 month creating a new stoma. He was on TPN long term with a long line as he wasn’t gaining weight. His stoma reversal was brought forward and recovery from there was smooth. We spent the first four months of his life in hospital. He’s now 10 months, thriving and happy.

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Mile 16 'OCEAN'

Mile 16 dedicated to Ocean. 
Ocean was born at 30 weeks gestation and developed NEC when she was one week old which was medically managed but she had to have 2 surgeries in the following couple of months for post NEC strictures as unable to tolerate feeds. She is now 6 weeks old corrected and doing well, gaining weight and is a happy little baby 

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Mile 18 'HENRY'

Mile 18 dedicated to Henry. 
This is Henry, born 33+4 alongside his twin brother Adam... Henry developed NEC at 3 days old and sadly caught Sepsis due to it and passed away at 6 days old.😔💙 Well done Maz for raising money for NEC, a subject more people need to know about and understand. X

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Mile 20 'LENNY'

Mile 20 dedicated to Lenny.
Lenny... born 26 weeks due to preeclampsia our first born son we have 6 children inc Lenny .. normal Tuesday midwife appointment in afternoon sent straight to maternity day centre I felt great no signs at all was debating on cancelling midwife as felt gd ... on the wed was told being moved hospital as may have to deliver earlier Leavin at home our four daughters ... Thursday Morning came and i walked down to theatre c section our little fighter joined the world . 26/3/2011. Weighing just 1lb11 oz .. 5 weeks exact we had no problems at all kangaroo care was amazing but going home Leaving was harder ... phone rings 7-30 am to tell us he has stomach infection the hospital we’re amazing like family ... I arrive 9 am our little boy not our little boy he was swollen see through and they started to ventilate him at 10 am , 4-15 pm they finally got him stable to move to another hospital ... we told not to go til after 6 pm we arrive at next hospital 6 pm 8 pm our world collapse we get told he has nec ... Friday 10-29 pm they operate on the ward 85 percent stomach takin away .. Saturday Morning 8am doctors round he stable he doing great .. fast forward to 2 pm Saturday he gone down hill real quick . From neck down on one side he was black were nec had takin over . Sunday family came said gd bye 4-13 pm may 1st 2011 our little fighter took his last breath in my arms outside in children’s garden .. I held him for 3 hours before takin away ... nec is a cruel illness .. he would be 10 this year and every day he spoken bout ... pics included only one time he ever wore clothes and the young girl is my youngest daughter 7 days before he left us . We have had a another little boy River age 9 this April he was also born early but that was because of Lenny no risks takin ... missed by so many if love could conquer nec he would be here now like so many others .. please do share x

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Mile 24 'LIAM'

Mile 24 dedicated to Liam. 
This is Liam, he’s 3 years old now and September 2017 he was born at 27 weeks weighing 1lb 9, at 2 weeks old we found out he had NEC (aswell as meningitis & sepsis) he ended up with surgery & 10cm bowel removed and a stoma placed, in January 2018 he went for the stoma reversal and ever since he’s been totally fine and he’s doing so well he’s just a happy content funny boy x

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Mile 26 'Thomas'

Mile 26 dedicated to Thomas. 
His mummy said:
Thomas was born at 29 weeks when I developed pre-eclampsia. He was doing so well until he was 3 weeks old when he needed a blood transfusion. The following morning I was told he had NEC and needed to be transferred to another hospital for an operation. 5 weeks later and 2 more operations, our little fighter had done all he could. I held him to tight while he passed away in my arms 👼miss him so much x
Please share or donate if you can to raise awareness and support families affected by Nec.

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Mile 28 'PAUL'

Mile 28 dedicated to Paul
I'm Paul Clough I was born in 1970, full term with haemeolytic disease of the new born (rhesus negative). I needed 2 blood transfusions and a blood exchange, duri g this I developed NEC and was moved from Burnley General hospital to Pendlebury children's hospital Manchester for surgery (the best bit I got police escorts to hospital 😁) when they operated the found that I had too much pre-gangrene around my illium to do a resection, so they just closed me back up and pumped me full of antibiotics and other drugs giving me 6 months max nearly 51 years later I'm still here with no lasting problems. I do have rubbish teeth but that is due to the drugs stripping the enamel off them and weak stomach muscles where they open me up but I can live with that. The only record I have is the newspaper cuttings my dad saved, seeing the photos of new babies gives me a insight to what I went through. While in Pendlebury I spent it in an incubator in a soundproof room as NICU was too noisy and nobody except nurses were allowed to pick me up for 6 weeks, born 7lb 5oz and went down to 2lb 2oz , hope this long story helps 😊😊

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Mile 30 'KARLA'

Mile 30 dedicated to Karla
This is Karla, she was born at 23+6 weighing 620g on 14/1/20. At just over a week old, Karla’s tummy was starting to change colour and becoming very swollen. The consultants mentioned it could be NEC, we had never heard of it before. They tried to treat her with antibiotics but they didn’t work & on the 27th January we were told she wasn’t stable enough for surgery and was becoming really unwell. The drs managed to stabilise her over night and get her stronger for surgery on the day she turned 2 weeks old. 28th January we had to sign the forms for her to b taken to theatre. Karla’s surgery lasted 2 hours and 10cm of her bowel was removed and a stoma placed. They said her bowel was severely perforated with lots of holes from the NEC. Karla started to do really well but when she was 93 days old she became very unwell and became our forever angel baby 💔 Karla’s cause of death was sepsis with NEC as a contributing factor. This picture is 3 days before she died. I will love you forever my girl, with every piece of my shattered heart. Until I see you again my baby 💔😢 14/1/20-16/4/20

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Mile 2 'Ollie'

Mile 2 dedicated to the beautiful Ollie.
His mummy is our amazing trustee Lyndsey.
Ollie was born at 32 weeks with his twin brother Charlie. Ollie developed NEC, became very poorly and very sadly died at ten days old. NEC can develop very suddenly so awareness is important. Parent know their baby and we knew something was not right but didn’t know that NEC existed.

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Mile 4 'LENNY'

Mile 4 Remembering Lenny 
Lenny was born at 26 weeks 750g he had a heart problem and only 1 kidney. At two weeks old Lenny had heart surgery that could not give me know odds of him surviving. 7 weeks old and I got a call at 4 in the morning can I come in Lenny was going to surgery they think he has NEC an hour later he was back and we was set up in a room to say goodnight. At 11.13 pm Lenny past away in his sleep.

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Mile 6 'Olivia'

Mile 6 in memory of Olivia.
We are lucky enough to have Graham Williams her daddy as one of our new volunteers 
Olivia was born at 28 weeks weighing just 700g , she developed nec very suddenly and became very ill within hours . Olivia sadly passed away 10 days old . It was so scary how quickly it happens with little or no warning . Awareness is so important and how deadly nec can be especially when we never had heard of nec.

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Mile 8 'ISSY'

Mile 8 dedicated to the beautiful Issy
Isabelle - 
Born at 38+2, developed NEC day 4 of life. Pre-existing Down Syndrome, congenital heart defect, and blood transfusion for polythycemia. 
Stoma from day 5 to 18 months. Now 4.5 and thriving 

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Mile 10 'GEMMA'

Mile 10 dedicated to Gemma. 
Gemma is nearly 11. After surgery for NEC at 6 weeks then 2 more suspected episodes she was 9 months before she got home from the hospital.

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Mile 12 'ESME'

Mile 12 dedicated to Esme. 
Esme - born at 32 weeks. Developed NEC at 7 days old and underwent emergency surgery. We were told to expect the worst and to say our goodbyes but she pulled through ! Then came a bumpy 5 months whereby she needed 3 operations in total, 7 blood transfusions, 2 lumber punctures and the list goes on of everything she is still trying to overcome but I could not wish for a happier little girl with her twin sister!!!

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Mile 14 & 15 'ROMANII & SERAYA'

Mile 14 & 15 dedicated to Romanii & Seraya. 
Romanii & Sereya, 2 of ggg triplets born at 25+5weeks Romanii weighing 800g, Sharna 670g & Sereya 650g, Romanii developed NEC at 13 days old, despite antibiotics and surgery she was too tiny and poorly and grew her wings at 15 days old in my arms having our 1st and last cuddle, Sereya developed NEC at 6 weeks old exactly 1 month to the day Romanii became an angel,  had surgery to removed 1/3 of bowel with a successful rejoin, however became critically poorly  again 5 weeks later after recieving her 1st imms and live rota virus vaccine, both girls tested positive and were transferred back to the level 3 NICU of birth, over the course of the next 5 weeks she had 4 more life saving surgeries, 3 perforations, 3 stomas at one point, 1 stoma at present but is due to have her rejoin sometime soon 🤞, Sereya is now a happy but tiny 9 month old who loves making zombie noises with her surviving triplet sister Sharna 💜💜💜👼 

Mile 14 & 15 dedicated to Romanii & Sera

Mile 17 'ARLO'

Mile 17 dedicated to Arlo. 
Arlo was born at 34+4 weighing 3lb 7oz at 2 days old he was diagnosed with a vsd. However he managed well with it and we was a couple of week off discharge. Unfortunately at 4 weeks old Arlo became poorly with nec. He fought for 11 week and had two lots of bowel surgery but sadly nec had left his bowel necrotic & the hospital could not longer help Arlo. He came home for 4 precious days on palliative care and passed away in his mummy’s arms. Forever missed forever loved 💙

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Mile 19 'ROXIE'

Mile 19 dedicated to Roxie.
Roxie born 32wks developed nec at 3 days old and battle in vain for 10days with only antibiotics to help and ended up on day 11 she finally got the operation and nothing could be done her bowel was badly destroyed however my warrior still decided she wasn't ready to leave and still fought against this nasty evil disease for another 24hrs and on day 12 she lost her fight and sadly past away on the 13th of March 2019, leaving behind her identical twin (older by 2mins) Ronnie and 6other sister, and its the twins 2nd birthday on Friday (26 Feb 2019) xx

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Mile 21, 22 and 23 'Roman, Faith and Sapphire'

Mile 21, 22 and 23 dedicated to Roman, Faith and Sapphire. 
My micro preemie triplet’s  born at 24 weeks +1.  Our trio all suffered from NEC. Triplet 2, Faith weighing 500g had a perforated bowel and was operated on twice. Faith was an amazing warrior and fought so hard until she went to her eternal resting place, after 13 days of life. 
Triplet 1 Roman weighting 580g, suffered from NEC just over two weeks after Faith passed at 1 month old. He was in a critical state and was operated on and had a stoma as a result and left with 25cm of small intestine. The stoma was reversed early on because of high output and he became TPN dependent along with other medical complications. He kicked the TPN but is dependent on a continuous feed and medication. He too fought so much to overcome so much thanks to his amazing team of medical staff and God.  
Sapphire, triplet 3 weighting 520g became ill with NEC at 35 weeks. The medical staff spotted the signs early on and she was treated medically. It was still a long journey getting her feeds back up, but she did it. By the grace of God, she became another survivor of the NEC. If it wasn’t for their sister Faith we would not have been able to advocate for our triplets and finding this group made me realise we weren’t alone.

Mile 21, 22 and 23 Roman, Faith and Sapp

Mile 25 'Buddy-Lee'

Mile 25 dedicated to Buddy-Lee. 
This is Buddy-Lee he was born at 30wks 2lb and is twin 1 .. he had NEC at 18 days old transferred to the royal london hospital where he under went life saving surgery the surgeons gave him a 2% chance of survival .. 2 months later he had another life saving surgery he was left with 10cm small bowel .. he spent 17 months as a inpatient 2 stomas , a stroke , liver disease , gallstones , cerebral palsy,  autism , global development delay,  adhd ... he is total gastrostomy dependent .. he came off tpn 18 months ago .. he is now 4.

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Mile 27 'ROO'

Mile 27 dedicated to Roo. 
Baby Roo is a NEC warrior. He was born at 24+5 weeks. He had NEC twice, the first when he was 2 weeks old was medically managed with 3 lots of strong antibiotics and gut rest. The second time was much scarier. He was just over 4 weeks old. We were transferred to the children's hospital an hour away. It was touch and go at times. He ended up with surgery to remove the affected bowel and had an ileostomy (not sure that's spelt right) for what was meant to be 4 months. However he needed to have his reversal after 6 weeks as he was having real issues digesting any milk. After the reversal he thrived! He was like a different baby. We're so thankful that we're one of the lucky ones. Roo is now a cheeky 14 month old. Thank you for all you do in raising awareness ❤

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Mile 29 'GRACE'

Mile 29 dedicated to Grace
This is Grace. Grace was diagnosed with NEC at 5 days old was treated with antibiotics and then came home but sadly we had to take her into hospital a few days later as she shown signs of NEC again, the doctors said this was a very small chance that NEC had came back so they didn’t treat it as NEC. She died at 9 weeks old from Colonic Stenosis as a sequel of NEC xxx

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Mile 31 'MICAH'

Mile 31 dedicated to Micah
Micah and his twin Zachary were born just shy of 27 weeks. Micah developed NEC at 6 weeks old and died of complications just before their first birthday. Jenn his amazing mummy set up NEC society a non profit organisation in the US. 
Read their story here:
https://www.huffpost.com/.../remembering-micahs-smiles...

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