PREMATURE BIRTH AND NEC
Baby Luka was born very prematurely at just 30 weeks. He contracted the serious bowel disease NEC. He survived after emergency surgery and is now a health one year old.
Millie, who was born at just 28 weeks, is also a loving child with a startlingly mature awareness of her twin sister Scarlett, who tragically died aged just one month.
Kai suffers from a serious lung disease called PCD. Children with this rare condition have a persistent cough from birth and face a lifetime of recurrent chest infections. They often develop hearing loss and eventually permanent lung damage.
Elijah was born extremely prematurely at 25 weeks and three days, weighing just 823g and, sadly, lived for just 37 days.
Tom was diagnosed with quadriplegic cerebral palsy before his first birthday and discovering that their baby son would face a lifetime of disability was heartbreaking for Maria and husband Terry
Baby Luka was born very prematurely at just 30 weeks. He contracted the serious bowel disease NEC but thankfully he survived after emergency surgery and is now a health one year old.
The determined cries of her one-year-old son mean the world to Rachel and her husband Carl, since little fighter Jacob was born at just 30 weeks after Rachel developed the serious pregnancy complication pre-eclampsia.
Georgia was a healthy baby but at around 12 months old, her stools became looser and she developed a severe rash. After becoming very unwell with a high temperature she was admitted to hospital.
Eva has problems with strength, balance and co-ordination, tires easily and suffers from a type of tremor that becomes more pronounced when she moves.
Finn suffered a stroke just before or during his birth causing cerebral palsy which affects the right side of his body. He has a condition called dropped foot which can make walking very difficult and tiring.
When Skye was just four years old, a large tumour was found very close to her brain stem.
After emergency tests in hospital, Inge was given the shocking news that she had a life-threatening pregnancy complication. Baby Emma was born 12 weeks early, weighing just 1lb 13oz and measuring less than 30cm long.
Shortly after his birth, Robbie was diagnosed with a condition called Pierre Robin Sequence. He had difficulty feeding and breathing due to a cleft soft palate and a small, receding lower jaw.
Finley was born with Apert syndrome – a rare condition that causes a range of health problems including craniosynostosis where the plates of the skull fuse together too early, while the baby is still in the womb.
Aiden suffered from a shortage of oxygen at birth and was whisked away to the intensive care unit where the team began to reduce his body temperature to protect him from brain damage.
Freya was born three months early weighing just 2lbs 4oz after Steph developed a life-threatening pregnancy complication.
Recalling the time when her daughter Sophie’s seizures first began, mum Anne says: “Sophie first noticed something unusual happening when she was cross country running aged 11.
When little Noah was diagnosed with the rare disease Landau Kleffner syndrome, doctors told his parents Madeka and Ryan, ‘Don’t look it up because it will really scare you’.
Ioan is a bright boy who loves swimming, running and making people laugh. But he has also suffered from bullying, with older boys picking on him at school and imitating his tics which are a symptom of his Tourette syndrome.
When Joey was just four years old, his parents Darren and Kathryn faced the terrible news that their little boy had a brain tumour.
For Vicki and husband Adam, hearing the sound of their baby’s laughter is incredibly precious, since Sophia was born at just 26 weeks weighing 2lb 5oz, after Vicki experienced severe pregnancy complications.
Lily has a devastating, life-shortening condition known as beta-propeller protein-associated neurodegeneration or BPAN.
Discovering that three of their children have the devastating, rare condition juvenile Batten disease has, says mum Dee, left the family feeling numb.
“Isla is always very positive. She copes well – but she has a lot of pain,” says Karen, whose daughter has the rare, disabling neurological condition Charcot-Marie-Tooth disease (CMT).
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.
Alfie is a lively nine-year-old who loves jokes and playing tricks on people. “He’s a cheeky boy who always wants to have fun,” says mum Samantha. But for Alfie, who has cerebral palsy, having fun is a daily struggle.
Born extremely prematurely, Jack has made remarkable progress. He is now a happy pre-schooler but, due to his early birth, faces potential health and developmental issues as he grows up.
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.
Jessica had a heart problem called hypoplastic left heart syndrome (HLHS) which affects one baby in 5,000. The left side of her heart was much smaller than usual, and could not pump enough blood to the body.
Twins Lucas and Oscar are the best of friends even though they are very different. Their mum, Meg, feels blessed that both boys are happy and healthy, as they were born very prematurely, at just 31 weeks.
Sam and Josh are identical twins and were diagnosed with autism spectrum condition (ASC) when they were six. They have a strong need for routine, find it hard to understand other people’s feelings and viewpoint, and their behaviour can be challenging.
Liam was a bright, happy baby and toddler, but at primary school he suffered from exhaustion and joint pain and struggled to learn to read and write. Liam was finally tested for Developmental Coordination Disorder (DCD), aged seven.
Neither Daniel nor Alex reached the expected milestones for their age: crawling, walking, gaining more independence, starting to speak, potty training. Both boys were finally diagnosed with a rare metabolic condition known as Smith-Lemli-Opitz syndrome (SLOS).
An ultrasound scan found some of Caiden's head measurements were larger than expected at around 20 weeks into the pregnancy. Fetal MRI confirmed a malformed vein deep within the brain – and as a result her pregnancy was monitored much more closely.
Jo was admitted to hospital for emergency surgery 29 weeks into her pregnancy and nobody knew what the outcome would be. Thankfully, she and husband are now the proud parents of Samuel, who survived being born at just 30 weeks.
Emily was born at just 34 weeks after her mum, Tracy, developed pre-eclampsia – a condition which affects up to eight per cent of pregnant women worldwide and is a leading cause of death and illness in both mothers and babies.
After Grace was born she started reaching all the important milestones, but things began to change from nine months. Other babies started crawling, walking and talking, but Grace didn’t. She was showing the signs of Rett syndrome.
A rare disorder affects Asher's brain causing physical, mental and sometimes visual impairment, and can also cause serious kidney problems
Felix was diagnosed with high risk, stage four neuroblastoma aged just four and tragically lost his life after two years of gruelling treatment.
Francesco developed worrying symptoms when he started school and was eventually diagnosed with LKS. The condition robs children of the ability to speak and understand language and can also include behavioural problems and autism spectrum symptoms.
Sullivan’s asthma symptoms – wheezing, coughing, breathlessness and tightness in the chest – were detected by doctors around the age of one. Unfortunately a diagnosis is not usually possible until a child is school age.
Nearly a month after Joshua was born, tests revealed that he had Jeune syndrome, a rare and incurable hereditary condition. Babies with Jeune syndrome are born with short arms and legs and an unusually narrow ribcage.
Daisy, who was born 13 weeks early, is now at school and has recently started gymnastics - and has become a big sister to baby Poppy, who also arrived early, five weeks before her due date. But Daisy's earliest days were a roller coaster of ups and downs.
Emma’s arrival was problem-free but, when she was just nine days old, mum Nicky received a call from Lewisham Hospital Paediatric Team asking to see her daughter as a matter of urgency.
For Maria and husband Terry it is an especially precious memory leaving hospital with two babies, since the serious pregnancy complication pre-eclampsia resulted in the twins being born two months early by emergency caesarean section.
Tom was diagnosed with Duchenne when he was four, but his parents were concerned about him from his earliest days.
Kira was a bright, happy two-year-old when, sadly, she was involved in a car accident which resulted in devastating injuries to her brain.