meet our patients

Elliott Casey

Twelve year old Elliott Casey was diagnosed with a rare brain tumour which only affects ten children in the UK a year.

Before his diagnosis Elliott was complaining of weakness down his left side. His talking was not affected and he didn't complain of being in any pain, however he had lost part of his smile. For anyone who has the pleasure to meet Elliott, his beaming smile is the first thing you see. When he wasn’t able to smile properly his family knew there was something not right.

Once his diagnosis was confirmed, he was transferred to Alder Hey Children’s Hospital and had surgery to remove the tumour. As well as the brain tumour being removed, he was fitted with an Ommaya Reservoir. This has a catheter that enables his chemotherapy treatment to be fed directly to where the tumour is located.

Elliott has also been fitted with a Central Line. Some of the young patients at Alder Hey call it Wilbur but Elliott likes to call it by its official name, a Hickman line. This is a special white tube that is put into a vein of which some of Elliott's medicines and fluids can go through him, instead of him having to have lots of needles.

Since his operation Elliott has had his ups and downs but most of the time he's kept smiling and you wouldn’t always know he wasn't feeling well. Elliott is also being strong for his family especially his devoted mum Lisa who has also been undergoing treatment of her own.

Lisa was diagnosed with breast cancer in November in 2011 and received her first surgery in December and her second shortly after. Lisa’s chemotherapy treatment began in early 2012 and she has been spending a lot of her time going between her treatment and making sure Elliott is okay.

Lisa explains: "It's like I'm living on adrenalin."

Lisa is currently receiving her chemotherapy every three weeks and Elliott will be returning to Alder Hey every couple of weeks for his chemotherapy and his radiotherapy treatment will begin soon. No doubt Elliott and mum Lisa will continue to battle their fight together both keeping each other's smiles beaming.

Cameron Mathieson

Five year old Cameron Mathieson has unfortunately had to spend nearly three quarters of his life living in Alder Hey Children's Hospital. Cameron suffers from not one, but four conditions which together have a major impact on his quality of life.

Cameron was just three days old when he first arrived at Alder Hey Children's Hospital. A few days later he was diagnosed with Cystic Fibrosis, an inherited condition affecting the glands that produce body fluids or secretions, hindering the function of important organs.

Asked what it was like when Cameron was diagnosed, father Craig said: "Like the end of the world. Like being in free fall. Like hell."

Unfortunately for Cameron, this was just the start of his medical problems. When Cameron was two years old, his parents Craig and Lynette received more devastating news when he was diagnosed with Duchenne Muscular Dystrophy, a condition which affects the muscles making them weak resulting in limited mobility.

However, there was further bad news to come. After having nine operations to remove various blockages and adhesions in his gut caused by his Cystic Fibrosis, Cameron developed a condition called Short Gut Syndrome. As he has less than one metre of bowel left, less than is needed to live a normal life, he is now mainly dependent on intravenous feeding.

Despite all this, Cameron remains a happy, bubbly and upbeat little boy who never complains about the challenges he faces.

Dad Craig commented: "He's a fighter for certain. He spends his every waking moment making us smile."

Luckily, Cameron is now able to spend much more time at home with his family as his parents have been trained to care for him and been provided with the support needed at home to help him. However he still visits Alder Hey on a regular basis for appointments and also frequently has to have in-patient stays for specific treatments that can’t be done at home.

Asked about their experience at Alder Hey, Cameron’s parents Craig and Lynette said: "To be honest, it's not something we would have chosen and it's something we've learned to make the best of, after all who can say that they enjoy their child being ill? However, if Cam has to go to hospital and we have to work alongside a group of professionals to try and keep him well and able to enjoy his life as much as he does, then there’s nowhere else on Earth that we’d choose and no one else on Earth that we'd trust as we trust the staff at Alder Hey.

"From Cameron’s point of view, he has an extended family of nurses, doctors, surgeons, student nurses, carers, cleaners, chefs, physiotherapists and specialists who he loves as much as he feels loved by them."

Sarah Wyn

Fifteen year old Sarah Wyn has been a patient at Alder Hey her whole life. Sarah was born with a condition called Bilateral Talipes which meant her feet were turned inwards.

Mum Janet found out Sarah had the condition when she was just twenty weeks pregnant during a scan. She said: "I'd never heard of it before then and had no idea what it was. It was a very emotional and difficult time."

Janet was referred to Alder Hey whilst still pregnant with Sarah and met a specialist who talked her through the steps that would be taken from the moment her daughter was born. She was also introduced to the team who would be looking after her unborn daughter whilst at Alder Hey.

Sarah was born on October 1st 1996 and had her first operation to correct her feet at just four months old. Since then, she has had a further nineteen operations leaving her with fifty scars on her legs. In between operations, Sarah visits Alder Hey's physiotherapy unit three times a week to have physio on her legs.

Sarah said: "Although it's hard and it hurts, physio has helped me a lot, especially with my walking. I do all kinds when I’m here including swimming, walking, cycling and even play games! The new physiotherapy unit is a lot better than the old one it has a lot of new equipment such as the Wii Sports and the exercise machines."

The fact that Sarah can even walk is a miracle within itself as Janet was told Sarah would never walk. However miraculously, at fifteen months old, Sarah took her first steps. Janet said: "I am very proud of Sarah. She is so beautiful and brave and I admire her so much for coping so well when I know how hard it must be for her."

Sarah and Mum Janet like to see Alder Hey as a 'home away from home.' Sarah said: "The staff are more like family. They have held my hand every step of the way and I wouldn't be the person I am today without them. They are always very professional and supportive which is what you need."

said: "Alder Hey truly is the best hospital. I couldn't fault the staff and have made some really good friends here. Given things are the way they are, we couldn't have it any better."

Bilateral Talipes is quite an uncommon condition affecting approximately 1 in every 100 babies born. Alder Hey sees about … newborn babies with the condition each year.

Sarah said: "Bilateral Talipes is a hard condition to live with and although it causes me a lot of pain I wouldn't change it for the world as it has made me such a strong person.

My advice to anyone in the same position as me would be that although it hurts you just have to get on with it as no matter what there is always help available. Sometimes it may seem like there is no light at the end of the tunnel but you will always find someone in that tunnel who will help you along the way."

Danielle Manley

Danielle is seventeen years old and has been a patient at Alder Hey since she was three. She suffers with Systemic-Onset Juvenile Idiopathic Arthritis, a painful condition which causes inflammation of the joints in children. Danielle's condition was so bad that she had to use a wheelchair.

Danielle had tried three different treatments; Methotrexate, Atanercept and Anakinra, but none of these were successful in helping her condition. Due to the severity of her condition, Danielle was invited to join a research study of a new drug, Tocilizumab. For the past two and a half years, she has been attending Alder Hey’s Clinical Research Facility every fortnight to receive the new treatment and has seen a drastic improvement.

Danielle said "The new treatment has made a big difference. I can do a lot more now. I no longer need a wheelchair and I can go out with my friends, get to college more and sleep much better. I'm also not in as much pain now."

When asked what she thought about Alder Hey Danielle exclaimed, "It's a wonderful place! The staff at Alder Hey's Clinical Research Facility have made a dramatic difference to my life and I am so grateful for that."

Emily Coventry

Hi I'm Emily and I'm 15 years old. On the 5th June 2010, I was diagnosed with Acute Lymphoblastic Leukaemia (ALL) which is cancer of the blood and bone marrow. It was a bit of a shock at first but I just had to get on with it. Over the next few months after my diagnosis I was treated with several different chemotherapies at Alder Hey which is a treatment that destroys all the cancerous cells. After the first few treatments my hair began to fall out which I was distraught about at the time. The nurses suggested I got it cut short and this made it a lot easier for me.

As I wasn't responding as well as was hoped to the chemotherapy, it was decided in July 2010 that I should have a bone marrow transplant as soon as a donor was found. The support I received was epic! Almost everyone we told offered to be tested for a potential match. Fortunately however, my brother Charles and sister Sarah were both a positive match so there was no need for anyone else to be tested.

On the 7th October, in preparation for my bone marrow transplant, I was admitted to Alder Hey for 3 days of chemotherapy. I was really anxious about this at first but all the staff there were kind and supportive and made my time there as enjoyable as possible. After 4 days of radiotherapy, I was moved into the Isolation Unit with my Mum to receive the 1.5 litres of bone marrow donated to me by my sister. I had to stay in isolation during the transplant as I was at very high risk of catching infections. I don't really remember much about the next 6 weeks as I was on very high doses of pain relief to help with my joint pains and mouth ulcers which were a side effect of the bone marrow transplant.

Not long after being discharged from isolation, I started to show signs of Graft-versus-host disease (GVHD). GVHD is a side effect of a bone marrow transplant which occurs when the donor's bone marrow attacks the recipient's body. It can be a good sign that the transplant has worked however mine developed into chronic GVHD, which is when it becomes more severe. It affected my entire body and unfortunately meant I had to spend Christmas 2010 in Alder Hey. Although it was not ideal as it was my nephew's first Christmas, it was not as bad as I thought it would be as Santa came with an extra sack of presents for me! The nurses were great and made it as special as possible for me and all my family where able to spend to the day with me.

I spent the next 6 months in Alder Hey fighting all kinds of viruses and infections. The GVHD of my skin got progressively worse and impaired my mobility, resulting in me needing splints to correct and maintain the movement in my joints. My GVHD also spread to my eyes resulting in me having cataracts.

My experience at Alder Hey has been interesting to say the least! All the staff here are really friendly and comforting which has made my time here a lot easier. I have got involved with lots of fun stuff while I've been here as well. I helped paint the wall in The Den which was a lot of fun. The Den is a room in the Cancer Ward where we can go to relax. There is a pool table, a television and a kitchen in it. Each week there is a movie night in there and we watch a film and eat pizza!

I have also got involved in lots of arts and crafts! I love art. When I was given the opportunity to pick the subjects that I wanted to study in school I picked Art, Performing Arts and Textiles! Throughout my time at Alder Hey, the Oncology play specialists Pip and Caroline have kept me busy with various activities. I have done Japanese weaving, clay modelling, bead work, sewing, cutting and sticking, painting and much more! Doing these activities has really helped take my mind off things and kept me preoccupied. It has also provided physiotherapy for my hands. I have limited movement in my hands, a side effect of my GVHD, and doing the arts and crafts activities has really helped improve this.

As I slowly begin to recover, I look forward to returning to the life I had before Leukaemia; being able to walk, dancing and even school! Meanwhile I continue to attend Alder Hey twice a week to have my dressings changed which I have on to help with my GVHD. Through all this I continue to enjoy the support of my family and friends and know they will always be there for me. My advice for anyone else with Leukaemia would be to keep your chin up as it can only get better!

Alfie & Oliver Skide

Helene Skide was overjoyed when she found out she was pregnant with twins. Unfortunately, during her pregnancy, both twins were diagnosed with heart conditions.

Helene said: "Their heart conditions were diagnosed antenatally, Oliver's at the 20 week scan and Alfie's at our 30 week cardiac scan. It was a shock when my partner and I found out the twins both had heart defects. We were scared because we didn't know what to expect. We were told we could lose Oliver due to the complexity of his condition."

Alfie and Oliver were born prematurely at just 32 weeks and were referred to Alder Hey straight away however were both too small to be operated on. Oliver was diagnosed with ventricular septal defect, double outlet right ventricle, transposition of the great arteries, pulmonary stenosis and extra muscle in his right ventricle and Alfie was diagnosed with a large ventricular septal defect. Although the twins are identical, the conditions they have are completely opposite to each other as Oliver’s condition meant that not enough blood was flowing to the lungs whilst Alfie's condition meant that too much blood was flowing to the lungs.

On 13th June 2012, aged 9 weeks, they were both admitted to Alder Hey for cardiac surgery. Alfie had his surgery first on the morning of the 14th June. He had a pulmonary artery banding to reduce blood flow to his lungs. Oliver had his operation the next day on the morning of the 15th June. He had a blalock taussig shunt to increase blood flow to his lungs.

After their operations, both twins were admitted to Alder Hey's Intensive Care Unit. Alfie was left with his chest open for a day so that doctors was able to tighten his band when necessary and was on the ICU unit for five days. Oliver stayed on the unit for four days and both were transferred back to the cardiac ward within hours of each other.

Asked about her experience at Alder Hey Helene said: "We have had some brilliant doctors and nurses looking after our boys."

Two weeks after their operations, the twins were discharged and the family were able to go back to their home in Ashton-under-Lyne. The family will have to return to Alder Hey in the future as the twins will both need further corrective surgery to their hearts as they get older.

Helene said: "My advice to anyone in a similar situation would be to stay strong and don't be afraid to ask questions, no question is a stupid question."

Rose Hughes

Ten year old Rose Nasimiyu Wegesa Hughes', originally from Kenya, was diagnosed with Hodgkins Lymphoma, cancer of the lymph tissue, when she was just nine years old. However ever since her diagnosis, she has been determined to fight it.

Rose was still living in Kenya when she first discovered she had cancer. When she was first diagnosed, Mum Phoebe remembers: "It was overwhelming. I cried and I screamed, it was a lot to cope with."

Before her diagnosis, Mum Phoebe had applied to emigrate to the UK and was waiting to find out if they had been granted access. Therefore Rose had to start her chemotherapy whilst still in Kenya. Each cycle of chemotherapy came at a cost of £600 which Phoebe was struggling to fund. However, Rose, not one to be defeated, came up with an idea to raise money to pay for her treatment.

Phoebe said: "Rose is very strong willed. She said to me one day 'Mummy I'm not letting cancer take me down' and that was when she came up with her song 'I believe' with the hope it would help pay for her treatment.

We went to a local studio and recorded it. We then sent it off to radio stations and asked them if they could play it. The reaction we got was amazing. All the radio stations started contacting us wanting to know more about the song. Then the media heard about it and started to show an interest."

As Rose's song become well known, people started buying it enabling her to continue to have chemotherapy while she remained in Kenya. Rose's song became so popular she made a music video for it which now has over 20,000 views on Youtube. She also has a Facebook page which has over 50,000 likes.

In November 2011, Rose and Mum Phoebe were granted access to live in the UK and were referred to Alder Hey Children's Hospital as soon as they arrived. Rose started her second cycle of chemotherapy however she unfortunately was not responding to it. She had a biopsy and her medication was changed.

Sadly, in May 2012, Rose found out her cancer had spread and started a more aggressive form of chemotherapy. However she has not let this dampen her spirits. She said: "I am staying positive, positivity is the best medicine."

Rose has just finished writing her second song about her journey with cancer and she is hoping to record it soon. She wants to one day be able to help children who are in the same position as her. She said: “My dream is to be an oncologist so I can treat other children with cancer. I could understand them as I will have been through the journey they are going through. My consultant Dr Hayden has told me what I will have to do to become a doctor and so I work very hard at school so I will be able to achieve it."

Asked about their experience at Alder Hey, Phoebe commented: "It's incomparable to any other places we have been, it's a great hospital. Everyone here is so supportive and really friendly. Rose is getting the best care and I feel we are in the right place."

Rose added: "The staff here have been very nice, kind and funny! There are lots of toys I can play with and I love having my own TV. The magic cream is great and I really like how I can still go to school.

"My message for anyone else with cancer would be not to give up hope. Cancer is not the end of everything. You can rise above it and be healed."

Carson Hartley

Carson Hartley has had a combination of complex problems and operations since he was born, some of which have been and still are potentially life threatening.

Carson’s medical problems include congenital heart disease, airway problems and a gastro-oesophageal reflux. He also has developmental problems, has limited hearing and is unable to speak.

Already in his short life, Carson has had more than eight operations including two heart operations to repair his heart defect. Because of his airway problems, he also has a tracheostomy.

Carson could not have survived without the operations and support that he’s still getting. It’s impossible to know what the future holds for him but he will certainly need long term support as he continues to be at risk of potentially life threatening problems at all times.

Carson has spent the majority of his life at Alder Hey. However, recently he has been able to take brief visits home during the day.

Amy Roberts

Our daughter Amy Roberts who is now 11 was diagnosed before being born as having:

• Double inlet left ventricle
• Transposition of the great arteries
• Hypoplastic right ventricle
• Pulmonary atresia
• Ventricular septal defect

Basically, the right side of Amy's heart had not developed properly which would mean she would need a series of operations and a heart and lung transplant when she became an adult.

Amy's condition was very serious and life threatening which meant she had to have heart surgery during her first week after being born. Two more operations followed the last one performed when she was 7 years old.

Amy has always been a little fighter and has recovered quickly following her surgery. Although she occasionally gets tired easily Amy is an active child who loves to dance but knows her limitations. As Amy takes Warfarin daily to thin the blood and prevent clots from developing she can bleed more if injured so is not allowed to do any contact sports such as rugby or hockey.

Amy may need a heart transplant in the future as without it, her life expectancy is only about 35 years.

Amy has been under Dr Ian Peart since her first heart operation in 2001 and he has been absolutely fantastic.

The whole team at Alder Hey are like close friends to Amy and us and are a great support.