Real stories

Sophie's story

Sophie was diagnosed with epilepsy as a baby and during her early years she was given drugs to control her seizures. Aged 10, she had a severe seizure and was admitted to hospital.  It took three weeks for her condition to be stabilised.

Now, 12-year-old Sophie has to take seven different tablets twice every day. She dreads having a seizure at school. Most of the children who know that she has epilepsy have been supportive, but there have been one or two who have made unkind comments. “She just wants to be like her peers and hates being different. One of her main fears is that people think she is stupid,” says her grandmother Caroline.

Despite the difficulties she faces, Sophie does not let her condition stop her cheerful spirit:  “It sometimes feels strange to have epilepsy, to not be like other children. Although sometimes it's good because I feel unique!” she says.  "For me though, freedom from seizures and their impact on my life would be brilliant.” 

Joshua's story

Joshua was born 15 weeks too early. He survived the birth, unlike his twin Harry who died at 20 hours old. But Joshua then became dangerously ill at just eight days old. Doctors thought it might be necrotising enterocolitis (NEC), but couldn’t be sure. This serious bowel disorder affects around 3,000 babies every year – and because it is difficult to detect up to 35 per cent of these babies die. Watch his story in this video and read about the research here.

Please be prepared – Joshua’s story is inspirational but some may find it upsetting.

Jack's story

Jack was born with Down syndrome. His parents noticed problems with his breathing when he was nine weeks old. It took another two years for him to be diagnosed and treated for obstructive sleep apnoea (OSA). Children with OSA stop breathing for a few seconds at a time during their sleep leading to problems with growth, learning and behaviour. This can be dangerous as it also puts extra strain on their hearts. Read more about the research here in our Touching Lives magazine, or watch this ITV Meridian news clip here.

Tito's story

Tito has cerebral palsy and lacks the ability to coordinate muscle movement and even something as simple as sitting is a challenge. He suffers from frequent whole body muscle spasms. Aged three, Tito started school and has been involved in trying out an ingenious chair for disabled children. The chair, designed and built by a team of researchers at the University of Bath, moves during the spasms of the child seated in it. Read more here.

Scarlett's story

Scarlett introduction to home life took five weeks. Seizures started when she was just three hours old and got progressively worse. “Those first few weeks with a new baby are meant to be the happiest time, but we were going through hell,” her mum Abbie says. She was diagnosed with hyperekplexia - or startle disease - when she was two weeks old. Babies with the rare condition become rigid and unable to move when startled and sometimes stop breathing, which can prove fatal. Read more here.

  Katie's Story

Born by caesarean section four weeks before her due date, Katie Haywood was soon diagnosed with an inherited condition affecting her liver. She spent five of the first seven weeks of her life in hospital. As a baby, Katie took part in Dr Susan Protheroe's research at Birmingham Children's Hospital. The special diet studied forms the basis of now accepted treatment to help avoid malnutrition in babies with severe liver disease. Today, a happy and healthy 20 year-old, Katie says: "I was born at just the right time. For the research to have improved my quality of life so drastically is priceless!" Read more here and click here to watch a video news clip featuring Katie and her parents.

Sophie's Story

Natasha wasn’t able to hold her daughter until she was five days old, so cuddles are even more precious now. Baby Sophie was born blue and totally unresponsive due to complications which led to her being starved of oxygen. Doctors used a revolutionary cooling therapy to reduce the risk of brain damage. Read more in the Research Review.  Also, click here to watch a video news clip featuring Sophie and her mum Natasha.

Sullivan’s story

Sullivan’s asthma symptoms – wheezing, coughing, breathlessness and tightness in the chest – were detected by doctors around the age of one. A diagnosis is not usually possible until a child is school age, even though evidence suggests the disease starts much earlier. Read about the related research in Touching Lives.  

Kian's Story

Kian had his first severe epileptic seizure aged eight. Now at 16, even with medication, he can still have them weekly. “All he wants is to be independent,” His mum says. Brain surgery offers hope of a better life for children with uncontrolled epilepsy and a pioneering brain imaging technique is being used to help identify those who may benefit. Read more in Research Review.

Alfie's Story

Every year in the UK hundreds of babies and children suffer a stroke, a condition most commonly associated with the elderly. Now aged seven, Alfie Oakley was just two when he had his first stroke. Read about Alfie in this Touching Lives article or watch Alfie’s inspiring story on this video. Read about the related research here.

Cameron's Story

Julie is devastated when people claim her son Cameron is “just naughty”. He screamed constantly for six months, stabbed his twin sister with a fork, ate the contents of his sister’s nappy and drank out of puddles. He drove his mum to a nervous breakdown before he was four years old. Cameron has been diagnosed ADHD, but his twin sister, Cariad, doesn’t have it. The family are taking part in an innovative study to help understand more about ADHD. Read more about the research here.

Cieran's Story

Cieran was just nine-months-old when he caught meningitis type B but the scars of his battle with the deadly infection remain today. Action Medical Research is funding a project to develop a new vaccine against meningitis B. Watch his story in this video and read about the research here. If you've been affected by meningitis and need practical support, visit the Meningitis Trust website or call 0800 028 18 28.

Claire's Story

Brave little Cameron Shearer was just 1lb 12 oz and only 12 inches long when he arrived, 16 weeks early. His mum, Claire, describes him as a cheeky little boy with a gorgeous smile. Sadly though, Cameron had a condition called necrotising enterocolitis. Claire says, “This is often fatal, it happens to very early babies because their gut hasn’t had chance to develop properly.  Their feeds cause an infection in the bowel that turns it to mush.” Cameron battled through 7 major operations but sadly died at just 5 and a half months – weighing only 8lb 9oz. Read about research into this condition here.

Emma's Story

Emma, aged 18, suffered her first major epileptic seizure on her eighth birthday and now experiences at least two major seizures every week, despite taking five different medications to help control her epilepsy. She has nearly drowned several times and fallen down the stairs head first too. She cannot ever be left alone but is determined to make the most of her life. Read her story in this Touching Lives article. Read about related research here.

Daisy's Story

Daisy, was born 13 weeks early and weighed only 1lb 8.5ozs.“It was very frightening for us to see Daisy connected to all the wires and machinery looking so vulnerable, but keeping her alive,” says Deborah. “She proved to be a fighter, though.” When Daisy was four weeks old, she took part in a trial using the Heartlight Sensor to monitor her heart rate.“We were happy for Daisy to do this as she had been given treatments that had been researched, and we wanted to be able to do something to help babies in the future.” Read about the Heartlight Sensor.

Grace's Story

After Grace was born, she started reaching all the important milestones, but things began to change between nine and 12 months. Other babies started crawling, walking and talking but Grace, now aged ten, didn’t. Although nobody knew it at the time, she was showing the signs of Rett syndrome. Read her story in this Touching Lives article or watch her with mum Gwenda on this video. Read about the research here. 

Jack's Story

When Jack swoops into the room with his red wellies on wanting to be a fireman, mum Lisa smiles with pride. Jack has come through brain surgery, chemotherapy and radiotherapy; he is her little hero already. He is just five years old. Lisa first thought her 14-month-old son just had a tummy bug when he started being sick. But she watched Jack get worse and worse in hospital and within 24 hours he was diagnosed with a rare form of medulloblastoma – a brain tumour, which children under three are particularly vulnerable to. Read his story in this Touching Lives article. Read about related research here.

Jack's Story

Little Jack Scarbrough proudly names the colours on the pages while his mum reads a book to him, just like any other toddler learning his way in the world. But to mum Sally it’s a miracle as Jack was born blind due to an incredibly rare genetic condition. Jack, now aged two, appears to be able to see more colours and shapes than was previously thought but this cruel condition leaves Jack’s eyes extremely fragile and his parents live in constant fear he will damage them and lose the little sight he has, permanently. Read more here. Find out about the research here. 

Katie's Story

Katie was born almost two months early, she needed resuscitating at birth and spent her first weeks of life in neonatal intensive care. At three-weeks-old her head became rapidly bigger, causing everyone alarm. A scan revealed she had hydrocephalus, also known as water on the brain. This had been caused be bleed and is a serious but sadly quite common complication for premature babies. Thankfully for Katie doctors were able to draw off the excess fluid with a needle, avoiding the need for surgery.Always a fighter, Katie was allowed home just two days later but has since had many difficulties to overcome. Read her story here. Read about research into related conditions here.

Malachi's Story

While most mums worry about their child picking up bugs at nursery, for Debbie it is a very real fear. If two-year-old son Malachi picks up a bug he can end up in hospital. He has a daily routine of medication and physiotherapy because he has a rare condition called primary ciliary dyskinesia (PCD). Cilia are tiny hair-like projections, which line the airways and ears. Cilia are supposed to beat rapidly, to sweep germs and dust out of the lungs. In PCD patients cilia don’t work properly. Mucus and bacteria build up in the airways, making children susceptible to infection and congestion and can lead to serious lung problems. Read more here. Find out about the research here.