Our Young People

Our Young People

We are adding new pages to this section each dedicated to a child from either EPICure or EPICure2. Ellie (EPICure) and Jocelyn (EPICure2) do the honours opening this new section. 

If you are a parent or a child who is part of the EPICure or EPICUre2 study and would like to share your story please contact EPICure and we’ll tell you what to do.

We look forward to hearing from you!

You can read the EPICure children stories by clicking on the individual links below:

Jocelyn’s story

From the EPICure2 study, this is five year old Jocelyn born on September 4th 2006 at 26 weeks and weighing 1lb13oz. In the words of her mum and dad…

Jocelyn Jade Church

Jocelyn lives in Hertfordshire with her Mum, Dad and pet Chihuahua’s Roo & Lola.

Jocelyn has been added to the Gifted & Talented register for her reading ability. Which is above average for her age.

Jocelyn’s nursery teacher approached me half way through her nursery year to say that Jocelyn had been sounding out words and that she would benefit from starting to learn some key words. We started practising these at home and realised that she was picking them up very quickly. Right from an early age she had always been interested in what particular words said and meant.

Jocelyn loves reading. Her favourite books are about the Disney Princesses but she really will sit down and read anything. She has so many books.

From an early age we have always read to Jocelyn. She loves to cuddle up with you and read a book or comic. We have always made sure that she finds reading enjoyable by letting her choose what the story will be and we discuss the story throughout and afterwards as well. Jocelyn will always ask questions to make sure she fully understands what the story is about.

Friends and family are always interested in hearing her read to them and continue to tell her how well she is doing. Her nursery teachers sent home some reading material to help with her progress and we kept each other up to date on how well she was doing.
 
We have to work very hard on Jocelyn’s core strength so we actively encourage her dancing she loves ballet lessons and street dance classes.
 
Jocelyn has grown and developed into a very loving child who is also very bright and when she is faced with a challenge due to her lack of core strength she always works hard until she has managed to tackle the task.

She is a very special little girl and it is a privilege to be her parents.

Ellie’s story

From the original EPICure study, 16 year old Ellie Campbell born at 25 weeks on 2nd August 1995 tells us about her life, her achievements so far and her aspirations for the future….

I’m Ellie and I was born 15 weeks premature in 1995 at Blackpool Victoria Hospital. I live in Hampshire with my parents, brothers and sister. I have just finished my GCSE’s and currently I’m in my first year of A-levels at 6th form college.

I am studying English Literature, Film Studies, History and Maths and I achieved 4 A*s and 8As at GCSE. I approach my studies enthusiastically with an open mind because I know how hard I have to work to get where I want to be. Which initially is university and then I would love to work in media such as a journalist or writer.

Some of the subjects that I excelled in were my favourite subjects such as English and History, however others such as R.E. and Maths weren’t.  I only worked really hard because I didn’t think I was very good at it. Also, I knew that having good grades in those subjects would increase my chances of succeeding in a competitive world.

I’d say my family have provided motivation by being good role models as they have worked hard and achieved good results and this has enabled them to pursue their dreams. My brother Chris is now coaching rugby and my other brother Jack and Hannah are both at university so I would like to follow in their footsteps by giving myself the opportunity to pursue a career.

I combine my studies and my social life by seeing my friends when I can, in lunchtimes at college and weekends as I study and work in the evenings and weekends. Also, I go to the cinema and live concerts and I love listening to music and have a passion for reading.

Being an extremely premature baby has not really affected my daily life and choices because I consider myself the same as everybody else and I’ve been treated the exact same as everybody else. Being part of a relatively large family has meant that I have had no special treatment growing up as the needs of my siblings had to be considered. When I was younger I suppose it may have had a couple of repercussions, as I suffer from a tight Achilles tendon which I had lengthened. I am also to have surgery later this year for a protruding jaw. Although these may have happened anyway as there are other family members with a protruding jaw and others who suffered from a tight Achilles. Even if these are directly related to my prematurity, they do not affect my ability to do the things I wish to do.

Update August 2016

Ellie has since graduated with a 2:1 degree in Literature and Film from Warwick University. She has enjoyed her studies so much that she has decided to enrol for a Masters in Television and Film studies at the same University. Well done Ellie and many thanks to mum Fran for sharing. 

Update November 2017

Ellie has just had confirmation that she has secured an MA in Film and television with a Merit. She will graduate in January 2018. She has also just commenced a role in the E Commerce dept at Robert Dyas’ offices in London.

Melaine’s story

Read Melaine’s inspiring story in the words of her mum May.

Melaine was born at 25 weeks weighing just 1lb 12oz. She was born in 1995 at the Queenmothers Hospital in Glasgow. There have been a lot of great times as well as a lot of difficult times over the past 16 years, for both the family & for Melaine. But all the hard work has been worth while. Melaine has coped tremendously well & is a credit to her family.

When Melaine was born I was told she had a 20% chance of survival, it was the worst time of my life. When she was only 1 month old & weighing just under 2lb Melaine had an operation on her heart to close the duct. When she was 3 months old, she had an operation on her eyes to stop the bleeding vessels, without this she may not have had any vision to this day. She has worn glasses since she was 4 ½ years old but has just recently starting wearing contact lenses, much to her delight - she is quite the young lady now.

Throughout her period in hospital, Melaine had many blood transfusions - I have never been so grateful to all blood donors & still give blood to this day because of this.

She was in hospital for 6 months before she was strong enough to come home. Even once she was home Melaine was on home oxygen & had a feeding tube, until she was 3 ½ years old.

When she was 4 years old Melaine needed further surgery. This time in her ears as her hearing was poor. She had to wear a hearing aid until she was 11 but has no trouble with her hearing at all now.

As with most prem babies, Melaine has problems with her lungs as they had not developed properly before she was born. Because of this she takes inhalers daily & has regular check ups. This does not hold Melaine back, she has a very active lifestyle & takes everything in her stride. She is a very happy young woman & lives life to the full.

Melaine is now in 6th year of High School & is hoping to attend the local college next year to study for a career in childcare. She is a very patient & loving person with an amazing personality so is very well suited to this career choice. She has a fantastic future ahead of her.

Kwame’s story

What follows is the very moving and inspirational story of 6 ½ year old Kwame Myers as told by his mum Hyacinth….

In April 2006, I was bleeding and having awful pains.  The majority of the pregnancy was like this but nonetheless I rushed myself to the hospital.  I knew it was time even though it wasn’t meant to be!  On assessing me staff confirmed what I knew and any pregnant woman’s worst nightmare…I was in labour and they couldn’t stop it. 

I had a very rocky start and had only just moved from my local hospital due to being unhappy with my care.  I had researched many London hospitals for one not too far but great for neonatal care.  I was plagued by dreams of early delivery and death. Kwame was born at 23 weeks and 3 days in 2006 at University College Hospital in Euston, London.  He is a surviving twin as his younger brother Shaka died when he was 23 days old of complications due to his prematurity.  It’s so bizarre when you see dreams unfolding before you.  Kwame weighed 740g (1lb 10 oz) and was perfect in every way just tiny and also very transparent.  His father and I  split up while I was pregnant and hasn’t been in his life much since. Kwame spent just over six months in hospital.  Four months in neonatal Intensive care, about 3-4 weeks in Special care and another 4-5 weeks in paediatric care.  During this time he had various illnesses and operations.  These included long term ventilation and oxygen use.  He was on oxygen for just over a year and a half.  He had a heart operation (PDA ligation), another hole in the heart that closed before release also, long term jaundice and liver problems, reflux, acute renal failure twice which self-corrected amazingly, septicaemia, NEC, hernia operation, RSV, pneumonia and many blood transfusions. Kwame has an older brother who is now 14 years old but was only about 7 at the time.  Just a little older than Kwame now.  He will be 7 this year.  We live in Hackney and although Kwame is very caring and compassionate and loves pets we don’t have any.  The space is too limited where we live. When thinking of Kwame’s biggest achievement, I have to say staying alive and being very healthy now.  He has an uncanny way of remembering so many facts although he has  been diagnosed with mild global delay. 

He just has some difficulty in writing and getting what he knows on the paper but it is barely noticeable.  He likes to take the role of carer at school and at home and is always helping people, checking they are okay and empathising if not. Kwame loves playing.  He goes into a very creative world where he is constantly inventing things and making things out of paper, cardboard boxes etc…..anything we adults would deem as junk.  He also loves drawing, painting and helping me make jewellery.  It is a joy as I am also an artist and jewellery maker amongst other things.  Kwame loves many books and watching children’s programmes as well as hospital and Paramedic programmes.  His toy ambulances are his favourite play things and since the age of four he has been talking constantly about his desire to be a Paramedic helping other sick babies and people when he gets older. We talk about the training involved on a daily basis as he questions me and we were lucky enough to have a visit recently.  It was a fantastic dream come true for him and he will not be deterred. Inspiration and encouragement have come from many people on all levels.  The hospital staff inspire Kwame and sometimes we go back for visits to the unit to see them.  I usually end up telling his story or answering questions to those parents there on the day.  Kwame says I am a good mum and is attentive much of the time.  His big brother teaches Kwame, plays with him and is a friend to him although like any siblings there are times when they get on each others nerves. 

Friends are very important to Kwame and two of his closest friends were also early babies which I find fascinating as we didn’t know until after they formed their friendship.  In school they are staff who actively encourage Kwame to do his best and don’t have low expectations which is important.

My mother especially and friends were my rock and I couldn’t have got through this alone without them. Kwame is  boisterous, cheeky, caring, compassionate, honest and fun.  The fact that he had a very bad start in life and is well and healthy generally is fantastic.  I was told that he may have been very disabled and may never be able to do some of the basic things due to his extreme prematurity.  He has taken part in many research programmes, has been under five different hospitals seeing different specialists and beaten everything.  He has chronic lung disease but no active problems and a mild delay but his mind is razor sharp.  He has defied doctors’ predictions and statistics.  He is amazing and a real blessing! 

Kwame UPDATE

After a visit to the Museum of the Order of Saint John in Farringdon over the summer holidays,  it was there that they watched a short film where badgers were featured.  Kwame was determined he wanted to join and after contacting them online his mother finally found a place for him at the St Pancras Sett in Camden.  He has now been awarded his first badge (The Hungry Badge) and made his promise all since joining in September.

Proud mum Hyacinth said “He is just as keen as ever to be a Paramedic and is talking about it every day as well as reading a very detailed First Aid manual.  He keeps telling people he’s a First aider but I have to remind him he’s in training.  The Staff at St.Pancras have been great and so welcoming.  I really admire their dedication”.

Kwame who is happy to be training for his much desired career as a Paramedic said “ I will be a first aider and need my first aid kit to take with me when we go out. I want to fly the Air ambulance helicopter too”.

Lauren’s story

Seventeen year old Lauren tells us in her own words her experience of growing up after being born extremely premature ….

My name is Lauren and I was born 15 weeks premature in September of 1995 weighing 1lb 13 ounces. 

I caught an infection and my weight dropped to its lowest at 1lb 9 ounces.  It seems strange that my birthday is in September and should have been in December.  I spent the first 3 months of my life in hospital in the intensive care unit.  I had chronic lung disease due to being ventilated, a bleed on the brain and an innocent heart murmur but thanks to the special care and help from the neonatal unit at King George’s Hospital I was able to survive and leave their care without any problems. 

I live at home with my parents and younger brother in Gidea Park, Essex.  I have recently finished secondary school gaining 1 A*, 3 A’s and 8 B’s and am currently halfway through my first year at sixth form where I am studying Mathematics, Psychology, Biology, Chemistry and Critical Thinking at A level.

I have passed my grade 3 guitar exams with merit, and am currently learning to drive and applying for my practical test soon as I have already passed my theory.  I have always had the full support from my family and their encouragement has enabled me to believe that anything in life is achievable. Although I have not made my mind up entirely what I would like to do in the future I know that I would like to work with animals in some form, especially ones that are mistreated or ill and am working very hard to reach my goal.

Outside of school I enjoy socialising with my friends, going out for meals and to the cinema.  I also work part-time in a clothes shop.  I have a real passion for cooking, especially baking cakes and also love skiing.  I was fortunate to go on 2 trips with my secondary school in year 10 and 11 skiing in Austria which was very enjoyable and I hope to go again in the future.

I do not believe being extremely premature has affected my life in any way because I am able to do all the things that I want to do.

When I was a baby and small child I didn’t put weight on easily and so was always smaller than my friends but I soon caught up.   I have been quite healthy apart from the usual coughs, colds and minor chest infections. 

 Everyone has always treated me the same and not seen me as different in fact a lot of my friends don’t know how premature I was.  But being premature has made me realise how lucky I am to be healthy and has made me appreciate life more.

I have enjoyed being part of the Epicure Study, it makes me feel special, and am looking forward to being called again for the Epicure at 19.

Felix’s story

Tiny Felix was 17 weeks premature, but he fought to survive. Read his poignant story as told by his mother Cathy….

Felix was born at 23 weeks at Lewisham Hospital London, on January 29th 2006 at 3.20 pm, weighing at just 1lb 5 ounces. I remember the consultant coming over to me and saying: “We are going to try our best with him because he seems to be trying his best”.

He was quickly transferred to St Thomas Hospital London because of no available cots. So another hurdle for him was to survive being driven across town through London traffic but at least it was a Sunday .

Every day for weeks I thought: “This is the day he dies”, but he has just turned 7.

He was ventilated for 7 weeks. I lost count of the number of blood transfusions, then he had surgery for Retinopathy of Prematurity (ROP) and now wears glasses. Felix also needs to patch one eye for few hours every day to make it stronger and he is currently waiting for a date to have grommets inserted because of glue ear but don’t think this is because of his prematurity. Other than the above he is a healthy beautiful boy, the star of our family.

Felix lives in New Eltham in London with me his mum, his dad, and his 2 year old brother Finley whom he adores. He goes to an Infant school and is doing great. Above average in his maths and reading.

He loves music and has been taking Tap and jazz lessons for the past 2 years. He has drumming lessons, piano lessons and swimming lessons which he all loves.

‘So as you can see miracles do come true.’

Jordan and Dion’s story

Jordon and Dion survived their brother Courtney after being born at 24 weeks. Their mother Tracey tells us their moving story and shares their aspirations for the future…

On the 13th October 1995 at 24 weeks, I gave birth to spontaneous triplets at Edgware Hospital. Dion weighed 1lb 12oz, Jordon 1lb 9oz and Courtney 1lb 13oz. Sadly our beloved Courtney passed away 12hrs later due to his lung collapsing. Our boys stayed in the neonatal unit for 3 months where the doctors and nurses were fantastic. The road was rocky with the boys experiencing hernias, infections, jaundice, brain bleeds and blood transfusions. They currently live at home with me and their sister, Jade, who is 20 and at University studying Media Arts and our golden retriever Bailey. Their father has remarried and has a supporting and loving relationship with them. The whole family, nannies and granddad have been very helpful and supportive with their upbringing.

Dion had various special needs and was under speech, occupational and physical therapy. He went to main stream school but found it difficult as he had moderate learning and speech difficulties and was moved to a special needs school. At 17 and 6ft tall he’s studying Public Service at college. He is a loving and caring young man and wants to be a fireman. He enjoys sports, going to the gym, using his computer and playing on his xbox. He has won his Duke of Edinburg bronze award and has a Btec sports Level 1. He no longer needs an inhaler and due to an infection when he was a baby likes the fact he has no belly button.

Jordon Has always been a chatter box and loves playing sports. He used an inhaler but no longer requires it. At 17 he is 5ft 11” tall and he is boarding at a basketball academy while doing his Btec sports Level 2. He loves to dance and enjoys listening to music. Jordon aspires to play basketball in America and hopes to train to be a coach. He holds a place in Great Ormond Street Hospitals’ medical journal as the youngest baby with the biggest hernia, which is described as being the size of a small melon.

Lee-Ann’s story

Lee-Ann’s father shares her incredible story of survival against all odds…

Lee-Ann was born at 24 weeks gestation with her twin sister Jamie-Lee at Warrington hospital on 22nd June 1995.  Lee-Ann weighed 1lb 6ozs and Jamie-Lee weighed 1lb 8ozs and both were put on emergency oxygen as the hospital could not support twins in the neonatal unit.  Soon after the twins were transferred to the neonatal unit at Liverpool Women’s Hospital.  By this time the chances of Jamie-Lee’s survival were considered to be quite strong but Lee-Ann’s were very low and she had to have lung surgery within the first 24 hours of being born. The twins were also given experimental drugs developed at Liverpool University intended to give them a much better chance of survival.

Every day it was a struggle to walk to the neonatal unit to visit the twins. It almost felt like someone had put lead in my shoes as we would expect neither of them to survive because they were so small. This was especially true of Lee-Ann being so tiny and having so many issues with her lungs followed by countless blood transfusions to keep her alive.  On the second day the worst happened: we were told that one of the twins had suffered a sudden bleed and was being kept alive only by the respirator and this would need to be turned off.  At this shocking news we automatically started to grieve Lee-Ann because we assumed she had died. In fact it was the strongest twin Jamie-Lee who had died. This lead us to wonder about the smaller Lee-Ann’s chances of survival and everyday became harder and harder.

Lee-Ann gained strength after Jamie-Lee’s death and she was moved from the neonatal unit to the oxygen dependent ward, an encouraging step indicating that she would be OK and one day come home.  This hope was only set back when Lee-Ann experienced breathing difficulties and had to be returned to the neonatal unit once again fighting for survival.  On the 12th August Lee-Ann was in the neonatal unit with all the machines turned up to the maximum as this was her only hope because her breathing had become so bad.  We were told to expect the worst and to be very proud of Lee-Ann whatever happened because she was a little fighter to have survived so long. On the 15th August 1995 the machines started to beep and staff on the ward ran around like mad to find out what the matter was: Lee-Ann had somehow removed the ventilator from her mouth and throat and this is what had caused panic on the ward. To everyone’s surprise Lee-Ann was once again breathing on her own. The doctors just gave her oxygen for the following 6 hours and her vital signs remained stable. The following day she was put back on the oxygen dependent ward where she stayed until mid September when she was finally discharged and came home for the first time.

Lee-Ann remained on oxygen for 8 months until she no longer needed it. During this time she gradually came off her treatments to allow lung development and by the age of 1 she was treatment free.  Lee-Ann went on to walk at 4 years old and started to enjoy school.  During this time she also found a love of conversation and would talk constantly about most things happening at school and home.  In her early teens she also developed a love for music and she would listen to all types of music and enjoy attending concerts.   Now she is nearly 18 and very healthy although she does suffer from asthma. She has grown to 4 feet 7 inches tall which is quite small but her height does not trouble Lee-Ann in everyday life. Lee-Ann likes to listen to music after college on Youtube or on her sound system for hours and loves to attend arenas and theatres to see live music. She likes keeping in contact with friends she has known in the past using Facebook and the rest of the time loves a good chat with people.  She also loves going to Butlins in Skegness every year and attend conventions where she  meets famous people like David Tennant, Eve Myles, Nicola Bryant and Billie Piper – to name a few.

Lee-Ann is currently fundraising for The Newborn Appeal to help with the purchase of neonatal equipment for the Liverpool Women’s Hospital. She is looking forward to leaving college at 19 and to work as a secretary in an office environment as she has been on work experience at college doing this type of work and really enjoys it.

Lee-Ann lives in Wigan with me her dad and her 13 year old sister Kate but she likes to pay regular visits to her mum to spend quality time with her and her half siblings Bryan and Robyn. Lee-Ann is doing well at college in all subjects, especially drama. She is part of the Connect 2 dance group that perform to other schools and at the Lowry Centre in Salford.

It is nice to see Lee-Ann live the full life that she battled so hard for when she was born, and I as her father hope that all her dreams come true in adult life.

Ewan’s story

Here is in the words of his parents the inspirational story of the first 19 years of Ewan’s life…

Ewan was born 15 weeks early on the 3rd of June 1995 and suffered a major brain haemorrhage when he was 2 days old, he was not expected to survive but if he did, it was not expected to be without significant disabilities.

Ewan did survive and apart from spending more time on the ventilator in hospital than we would have liked, he came home with his parents to join his 2 older brothers after 4 testing months. The brain haemorrhage left him with cerebral palsy which affects his mobility to some extent but not his attitude or outlook on life.

Over the years he has undergone some surgery to help with his mobility, some of it was quite major but he approached the whole process with his characteristic positivity and recovered quickly benefiting from the outcome.

He started taking driving lessons when he was 16 and passed his test just after his 17th birthday.

He attended main stream school and is now studying music at college in Aberdeen, a return journey of around 50 miles which he drives himself.  His primary subject is composition and his main instrument is cello. He has played in several orchestras and has his own business where he offers his services as a cellist for weddings etc.

Throughout his life he has been a tireless fund raiser for the Friends of the Special Nursery, the charity which supports the Neo Natal Unit he was born in. In August 2013 as part of his Silver Duke of Edinburgh Award he arranged and led a sponsored walk to the summit of Ben Nevis which he achieved under his own steam in just 4hrs 45mins.Ewan is a remarkable and inspirational young man who regularly addresses clubs and organisations where he talks about his attitude towards life and how he tackles the personal challenges he faces.  

In recognition of his contribution to the community he lives in, he has been selected to be one of the Queens Baton Bearers at the 2014 Commonwealth Games.

We his parents are so very proud of everything he has achieved to date and look forward with confidence to an amazing life.

PS Ewan’s big brother Greig is now also the father of a 15 week premature baby daughter. Amie weighed only 1lb 3oz when she was born just over a year ago, she is coming on nicely and we have high hopes for her as well.

Katie’s story

Intrepid cyclist Katie shares her own experience of growing up after being born extremely premature…

My name is Katie Hendry and I was born at 23 weeks in March 1995, weighing 1lb 07 ounces.

I spent the first 6 months of my life being oxygenated in Hillingdon Hospital under the intensive and special care baby unit. When I was just a few months old I was taken to Hammersmith Hospital for laser eye surgery to save my eyesight which had been damaged by the amount of oxygen I had been on. I wear glasses all the time now.

My lungs were very weak when I was born and were not formed properly. When I came home from hospital in the September I was kept on oxygen for another 2 years - wherever my mum and dad went they had to carry the oxygen cylinder around with them.

I live at home with my mum, dad, older brother and sister in West Sussex. I also have a little terrier cross called Suzi. I have chosen a career in Administration and have just successfully completed my Level 2 Business and Administration qualification. I am about to start my Level 3 course.

I have always had incredibly strong support and encouragement from my family and close friends throughout my whole life. This has certainly played a huge part in achieving my goals and getting me to where I am today.

Outside of work I enjoy spending time with my friends and family and walking down the beach with my dog. I volunteer on a Saturday morning to help an elderly lady clean her house which I have been doing for 3 years. I enjoy helping her because I have always been interested in caring for other people.

I feel that being extremely premature hasn’t stopped me enjoying life like any other person. Unfortunately I am unable to learn to drive due my eyesight being so damaged by the oxygen when I was a baby. I am unable to pass the number plate test but I have bought myself a bike so I have my own mode of transport, however I am still able to reach the goals and aspirations I have in my life.

Being premature does make me realise how lucky I am to be here today and to have received the outstanding care I did when I was a baby.

I really enjoy being a part of Epicure and keeping up to date with all the research they do to help other babies who are premature and their families. I am very much looking forward to taking part in Epicure@19.

 Update from Katie November 2017

I first wrote about my experiences of being born extremely premature back in April 2014. When I decided to write about what it has been like to be born at 23 weeks in 1995, I was working in Debt Management and studying towards a Business and Administration Apprenticeship. I successfully passed both Level 2 and 3 and experienced learning new skills on the job for 2 years.

Things have slightly changed from my original piece of writing. In October 2014, I started my first job as a Care Assistant which I very much enjoyed as it has always been in my interest to care for people. I completed my Health and Social Care Level 2. Whilst working as a Care Assistant, it made me realise that making a difference to someone’s life is very rewarding. I became more and more interested in becoming a Nurse, which has always been a profession I would like to be a part of. In the year of 2016, I completed an Access Course in Health Sciences at my local college. Successful completion of this would enable me to continue onto Higher Education.

Following the achievement of my Access Course, many interviews later, I am now studying at University in my first year of Adult Nursing. This is a huge success for me and I feel incredibly proud to be where I am. It has been difficult at times but even coming into the world 17 weeks early, it can be possible!