During pregnancy, we were told that although he was otherwise healthy, Bowen would have an upper limb difference and as a family we started to prepare for how we could help him overcome any obstacles this may present for him. But until birth, we were completely unaware of just how unique he was going to be.

Bowen was born with a previously undiagnosed 10p15.1p12.1 chromosome deletion which makes him one of a kind; Bowen’s is the largest deletion of the 10p chromosome recorded on the global database and he faces life-long complex medical conditions and developmental differences.

It is obvious to anyone that meets Bowen that he requires additional care for things that most of us take for granted with our little ones - he is fed via a tube through his nose into his stomach using a machine, he wears hearing aids as he has severe hearing loss and he has to be physically supported with everything as he has musculoskeletal weaknesses meaning he is unable to roll over or sit up like most babies his age.

Yet this is just the tip of the iceberg as since birth, Bowen has been under the care of multiple paediatric consultants across two specialist hospitals and has already had to undergo an operation to widen his airway. He only has one kidney making him susceptible to urinary tract problems. He awaits an eye operation to lift his eyelids as he is unable to open his eyes fully meaning his vision is impaired. His heart and airways are monitored regularly by specialists, and he requires dietician, speech, language and physiotherapist assessments and support.

We do not know if he will ever be able to walk, talk or how severe his learning disabilities will be. We live each day as it comes and we love him to the moon & back.

Ben was born on October 19, 2012, following a healthy pregnancy and birth. At just four hours old, concerns about his health began to emerge. Initially, doctors suspected a lung issue, but further investigations revealed that Ben had Transposition of the Great Arteries (TGA)—a serious congenital heart defect.

TGA is a condition where the two main blood vessels leaving the heart, the pulmonary artery and the aorta, are reversed. This means oxygen-rich blood is not circulated to the body properly, creating a life-threatening situation.

Ben required an emergency transfer to Glenfield Hospital, as his condition was critical. By the time he arrived, he had turned blue due to lack of oxygen and needed an urgent balloon septostomy—a procedure to create a hole in the heart, allowing oxygenated and non-oxygenated blood to mix.

At just five days old, Ben suffered a seizure, resulting in brain damage. Doctors warned that he might never walk or talk. Despite this, his family focused on his recovery, determined to get him strong enough for the next step: open-heart surgery.

At just three weeks old, Ben underwent an eight-hour open-heart surgery, performed by Mr. Lotto and his team. After nearly two weeks in the Paediatric Intensive Care Unit, Ben was finally strong enough to go home where he proceeded to thrive.

By age two and a half, Ben was diagnosed with autism, sensory processing disorder, hypermobility, and other conditions. Though he is non-verbal, he is full of joy, energy, and resilience.

At age four, Ben started attending a specialist school, and today, at age 12, he loves participating in Little Miracles sessions where his mum, Cheryl, leads the Nottinghamshire branch.

Despite ongoing regular heart check-ups for a leaky valve, a narrowed artery, and a heart murmur, Ben continues to thrive, proving every day that challenges do not define his incredible spirit.

"We started coming to Little Miracles whilst Violet was undergoing diagnosis for her disability. At the time I knew she had a problem with her mobility but I didn’t know to what scale, or the implications it would have on her health or our family. Since then she and also her little brother Charles, have been diagnosed with spinal muscular atrophy.

Violet loves coming to Little Miracles and it’s lovely for her to be included in every activity. It’s not just a safe, fun space for her to play. It’s somewhere that we as her parents can come and chat with other parents who are going through similar struggles.

We particularly enjoy the coach trips which without Little Miracles, we wouldn’t be able to afford days out like this.

Thank you so much, for always providing a welcoming place for our children to play"

"My name is Lizzy and I am mummy to three wonderful little boys, Max, 6, Teddy, 4, and Percy, 2. When Max was about 2 years old it became clear to me that he was struggling and by the time he was five he had been diagnosed with global development impairment and a speech and language disorder. In the past year he has also been diagnosed with autism. Max is the most wonderful joyful child and I am so lucky to be his mummy but he does face some considerable struggles. Parenting a child like Max can be an incredibly sad and lonely experience. As he has started school it has become more obvious how far he is falling behind other children his age. Max struggles to make friends at school and says he often feels lonely. He can't attend the clubs or after school activities his school friends do. This is really where Little Miracles has been a lifeline for us.

We were introduced to Little Miracles before Christmas in 2022 after a volunteer spotted Max walking around a market in ear defenders. She advised me to get in touch. Although we attended a Christmas party that year we really started attending events in the summer holidays last year. I was so worried about how Max would cope out of routine and with a long summer ahead but Little Miracles offered so many activities in our town that we filled the summer with fun. We were instantly made to feel part of the Little Miracles family. Max has been welcomed, loved and understood right from the start. He has made friends and had adventures, including a trip to Harry Potter World, that just wouldn't be possible for him without this wonderful charity. Max says every day at Little Miracles is the best day ever!

Max's younger brothers look forward to coming to Little Miracles just as much as he does and one of the most wonderful things is watching all the children of different abilities play together with compassion and understanding. 

For me Little Miracles has provided the love and understanding I needed at a time that I was finding parenting the hardest and most lonely. I know now where my people are. I can have a coffee and chat with other parents who just get it. I know that Little Miracles will offer the support we need as a family as we navigate the challenging and difficult world of raising Max. I honestly couldn't feel more lucky or more grateful and all I can do is say thank you from me and from Max from the bottom of our hearts"

"We are Sharon and Sonny and had have been part of Little Miracles for a couple of years now. We always feel welcome and supported. I know that if I needed help or advice with anything that I can ask.

Sonny has Autism and was only diagnosed aged 5. If I had an earlier diagnosis we would have done lots more with LM when he was younger. Before Sonny was 5 I found it so difficult to entertain him every day. Sonny likes to go out and would always want to know where are we going today. I exhausted all the parks in about a 30 mile radius. We used to go to places that weren’t too busy so he didn’t get too overwhelmed. The local area childrens stay and play type things did not hold his interest plus it was stressful for me as I didn’t know how he would react or behave especially when the singing would inevitably begin. The summer before Sonny started school was a very lonely and overwhelming, stressful time for me, how to fill 6 weeks?

Once we found Little Miracles there were so many things to choose from and so varied. We have done lots of firsts with Little Miracles including rollerskating, which he really took to straight away and it wasn’t too busy and he was ok with the music too. Recently we went to our first ever cinema trip, he does not sit and watch films usually but as it was Peppa and it was with Little Miracles we could relax and know that if he didn’t sit the whole time it would be ok and also when he talked loudly through some of it that was ok too. We go to pretty much every bouncy thing we can and he just loves it and it takes a lot of pressure off of me too and he gets to socialise. One of our favourite outings is Fenland Light Railway he loves going on the train and watching the Model Thomas train. At Christmas we went to Sandringham to see the lights and it was just magical. It was magical for us all because we got to go to something that we could be in safe company but also something that if it wasn’t for Little Miracles we would not be able to afford. We are members of Litttle Miracles Ramsay, Fenland, St Neots and Ely and now much more is happening closer to home in Huntingdon which is perfect for us. Sonny loves to know what he is doing and where we are going and when so to be able to book things up is fantastic. I no longer dread school holidays as I know there will be things to do. Little Miracles is brilliant and we would be lost without it. 

Thank you!"

"My husband and I have been on quite a journey with Little Miracles starting 10 years ago. Our son was born a very tiny birth weight and had trouble feeding. We had a difficult time with him and he really struggled with change and public places. We never left the house as he hated it. We were recommended the charity by a family member who used the centre in Peterborough. So we started attending sessions and found although difficult for our son we were accepted and supported by other families. We also had another baby in tow our daughter was very different but also struggled with social settings.

"Oliver was born severely disabled. During my pregnancy the doctors told me that he was in a state “incompatible with life”. They said Oliver’s life, if he were to make it that far, would not be a life worth living. At 35 weeks pregnant I felt pressured into terminating his life.  We were made to think it would be the kindest thing for Oliver. As a family we decided that for however long Oliver was to live that he would know he was loved.

Oliver spent 15 months in the Neonatal Intensive Care Unit before he could finally come home with us to Peterborough. I quickly had to adjust to the 'new normal'. Looking after Oliver was hard however it was the isolation that was crippling. My family and friends could not relate to what I was going through, my social circles broke down... I felt totally alone.

My story is far from unique. 11% of children in the UK are born with a disability. There are nearly 1.4 million families like mine, each with their own struggles, ambitions and stories to tell.  Yet the families we meet often tell us that they feel alone and that isolation is the hardest battle they face.

I started Little Miracles to ensure families that have children with additional needs, disabilities and life-limiting conditions can access the care and support they need and connect with each other in confidence and without judgement. I don’t want any family should have to feel as alone as I did.

Oliver is now 16. Oliver is still a poorly little boy who relies on machines to keep him alive but he is a bubbly, funny young man who is loved by everybody. Even 16 years on we are challenged by ‘the system’ every day. We have to fight for healthcare, for respite, even for Oliver’s right to an education.

Having a child with a life-limiting condition is draining, even with all the support in the world. But with the help of people like you things are a little easier.  

We are just a normal family trying to give our son the best possible life, no matter how long he is with us and with the help of people like you things are a little bit easier.  

Thank you for being there for my family, and my son.”

“Fergus was born with a very rare condition which means that he has severe physical and learning disabilities. It was such a shock when we found out, we had been in intensive care with him for two weeks but up until we were about to leave hospital we thought he was fine.

The consultant had never heard of 3P Deletion Syndrome before, she did some research and gave us some information to look at but we were scared and really didn’t know what to expect.

Over the next 5 years we would be into hospital numerous times. In the last 2 years we have only spent a total of 4 months at home. Our family have been so supportive, they have learned what Fergus needs so that when we are at home I can have a few moments to myself but it is still exhausting and I am worried all the time.

Last Christmas we nearly lost Fergus twice. We had to take it in turns to call the family and tell them that he had taken a turn for the worse. You would think that being told that Fergus may not make it so many times that you would get used to it, that it would get easier. But it doesn’t, it gets harder every time.

Little Miracles have been lovely and helped in so many ways. Whether it’s introducing me to new families who are in the same boat, bringing boxes of goodies to cheer us up in hospital or making sure that we get all the financial help we are entitled to, they are always there when we need them. During lockdown they gave us so much support, they made sure that the extremely vulnerable kids had a safe place to go and that as parents we were never on our own.

Little Miracles also helps us financially when they can. Fergus’ dad, Chris, works really hard to try keep us above water but we have to go to hospital in Leicester and he can only visit us at the weekends. He also needs to be at home to look after Fergus’ brother. Costs add-up so quickly, even just petrol and food. I spend most nights when Fergus is in hospital sleeping in a chair next to him in case he needs me but sometimes, when Chris is around, I’ve been so exhausted that Little Miracles have paid for me to stay in a B&B so I can get some sleep.

We don’t know what the future holds for Fergus but we do know that when things get tough Little Miracles will be super-supportive and will make things that little bit easier. They really are a lifeline for lots of families like mine”

“Delilah is a loving and happy almost 5-year-old with Rett syndrome.

At age 2 Delilah stopped talking almost overnight, shortly after she began to experience prolonged screaming episodes where she would be inconsolable. She then began to have times when she would stare blankly. After hearing tests she was seen by a neurologist who believed she was experiencing absent seizures and was concerned with her language regression. He believed she had a genetic condition and testing was arranged straight away. 

After 8 weeks we met with a genetic consultant who said all of Delilah’s initial genetic tests had not shown any mutations. However, from meeting Delilah she was confident she knew what condition she had and ordered the specific test.

That day was the first time I had heard of Rett Syndrome. I was told to go home and read about it. As soon as I did I knew that this would be what Delilah had. 

Over the next year Delilah began to lose weight, experienced drop seizures and convulsions and became more unsteady on her legs. It took 10 months for the results of the tests to come back and when they did it confirmed she had a gene mutation and Rett Syndrome. 

Delilah was diagnosed in April 2022, she was 3 years old at the time of her diagnosis.

Since then she has had PEG (feeding tube) surgery and is now almost NIL by mouth due to recurrent chest infections. She is due to have surgery on her eyes and requires adapted seating and a wheelchair to slow the curve of her spine. They believe that her epilepsy is uncontrollable because despite medication she is still experiencing daily seizures which are worsening, and Delilah is now unable to communicate now.

Getting everything in place for Delilah has been incredibly difficult, over the past 2 years Little Miracles have helped get Delilah her wheelchair and have given us a huge amount of emotional support. She attends a SEN school that she loves and where she is thriving and regularly visits the Little Miracles’ Sensory Room in Queensgate, a place where we feel comfortable and safe with our children.

Despite everything Delilah is very happy.”

"Our little heart warrior son, Aaron Dhruv Smith was born  in July 2015. He was born with a congenital heart disease (Hypoplastic Left Heart Syndrome, Two holes in the heart and a Coarctation of the Aorta) which required surgery when he was just 5 days old. Nearly 9 years down the line and 3 open heart surgeries later we have a thriving young man who is full of energy, love and love for life all thanks to the amazing Royal Brompton Hospital and the wonderful Brompton Fountain who enabled us to be close to our baby at a tough time and were there with support and care when we needed it the most!! 

Little Miracles helped Penny realise what an amazing mum she is and gave her the support and friendship she needed.

Children fighting cancer often ring the bell when their treatment is over, or when they get the news that they are in remission their families are expected to celebrate and get on with their lives. But that is only the start of their next journey, that of recovery and repair.

Support is still needed for these families long after their cancer is gone.

Can you help us support more families like Eva's?

I have 3 Beautiful Children, Ava, Elouise and Theo.

Ava and Elouise are my identical twin daughters who were born at 25 weeks gestation. We had something called Twin to twin transfusion syndrome which can only happen in identical twins who share the same placenta but have their own sacs. It is a disease of the placenta which restricts blood flow causing uneven distribution of nutrients between the twins. At 16 weeks' gestation I was diagnosed with late stage 3 TTTS, without treatment a day later my girls would have had hardly any chance of survival. I underwent laser ablation surgery, this is where they make an incision in the stomach and straight into the womb. A camera and laser are then inserted, we managed to see our girls on camera at 16 weeks' gestation. They then lasered the vessels of my placenta in half in the hope too even out the blood flow. As it was so early on in the pregnancy, the chance of it being successful wasn't as high as it could if I was at a later gestation.

My surgery failed, and our girls were born a few weeks later on 2nd Jan 2016. Ava was 760g (1lb10oz) and Elouise 400g (12oz) the same size as a tin of beans!

Ava was born not breathing. It took them 6 minutes too resuscitate her and then ventilate. It honestly felt like a lifetime before I was told she was stable. Truthfully, she wasn't stable for another 3 months but was whisked up to the neonatal ward for intensive care. Ava spent 4 months in 5 different neonatal wards, very rocky stay with heart surgeries, 10 weeks ventilated and sepsis and bowel disease 3 times. As well as endless infections, seizures, brain damage and a whole lot more. At 6 weeks old, we were advised to switch off Avas' life support. Her brain damage was so severe she was deemed 'incompatible with life'. We transferred to Addenbrookes for end of life care, and so Ava could meet her family for the first time. Addenbrookes saved her life and Ava is now 2 and a half, she has complex health needs, cerebral palsy and is funny, cheeky and full of attitude. Elouise was born crying, I remember hearing her tiny little cry which sounded like a little cat meowing! She was so, so tiny, so fragile. She had suffered a very large brain bleed at birth. Her tiny little body was hidden by all the wires, ventilator tubes and blood transfusions. Graham and I had to make the heart-breaking decision to turn off her life support and at 18 hours old, Elouise passed away in my arms.

We truly believe we made the right decision, we always said that we would much rather suffer the pain of losing a child instead of our child suffering for us.

Theo is our beautiful little boy.

After having the most horrific pregnancy previously with our girls, a healthy, straightforward pregnancy was a true blessing. Planned and perfect, there was no cause for concern. Fully prepared this time, we had everything ready and his little crib had just been put up next to our bed.

At 35+2 weeks pregnant, I hadn't felt him move for a good few hours but didn't think much of it. I wiggled, drank icy water and still no movement. Graham come home from work, took over caring for Ava and I took myself up to the hospital too be checked over. I sat in the waiting room for an hour, all the time thinking it would be nothing to worry about.

I get called in, they try and find his heartbeat….silence.

At this point I'm sat here, on my own knowing what is going to be said too me. My heart sunk, and I frantically try and get care sorted for Ava so Graham can come to the hospital. A consultant came in, scanned me and called for a second opinion. They wouldn't wait for Graham too arrive. Instead whilst sat on my own they tell me my precious little boys heartbeat has stopped. Absolutely heartbroken I ring Graham and just blurt out the news too him. Waiting for Graham too arrive felt like forever when in reality it was only a few minutes but my god that wait was torture.

I found Little Miracles when Ava was about 9 Months old, at this point I had severe post-natal depression and post-traumatic stress disorder and couldn't bring myself to leave the house. I hadn't been out with Ava on my own, ever. Ava was, and still is on oxygen so having extra equipment to carry was difficult but it was that people would stare and quite often ask what's wrong with my child that hurt the most. That was until I went to Little Miracles. No one asked, no one stared, no one made me feel different. Instead they helped me, they interacted with Ava as you would with any baby and they became my friends. Ava loves the centre and her favourite part is the wheelchair-accessible trampoline. They provided me with counselling which saved me. A few months later I decided to become a volunteer and ended up working there. I had just gone on maternity leave when I lost Theo. Michelle and the team were absolutely fantastic. They sent Graham, Ava and I away for a week to their caravan which was much needed. Ava was struggling and time away as a family helped us no end.

Without Little Miracles, and the people who donate counselling and the centre wouldn't be possible and I do not know what would of happened to me. Little Miracles have been a lifeline for my family. I cannot thank them enough for everything they do for us. I will be forever grateful.

He cannot walk, talk, eat or drink. He is fed and via a tube into his nose. He is considered “life limited,” something that as mum I can now say. Alex has spent around 9 months of his life in hospital, one of his condition called apnoea means he stops breathing on a regular basis and he has been resuscitated by the Little Miracles team many times. Alex also has complex seizures meaning that he will have a fit roughly every 10 minutes. His type of epilepsy is drug resistant and affects his whole brain. He is not a candidate for surgery and there is no treatment. All we can do is make him comfortable.

Alex is a poorly little boy, but he is also a little boy who, thanks to Little Miracles has friends – and currently is particularly fond of playing Goat Simulator with his friends.

Little Miracles came into our lives when Alex was four months old. He had not reached his milestones and was seriously underweight. I had just been given the news that the doctors suspected a syndrome of some kind but were not sure until the results from genetics came back. Each time he ate he choked, vomited and cried. Alex was also having constant jerks which made him cry. I later found out this epilepsy. I felt alone and isolated. We were recommended to visit Little Miracles by a nurse at the hospital and we have never looked back.

I remember walking through the Little Miracles door for the first time and being met by Michelle King. You just knew she understood what I was going through without me having to open my mouth. She took Alex and gave him a huge cuddle. Being a special needs parent you will understand how this is worth a thousand words. Generally people will stare, look frightened or would ask ‘what’s wrong with him’. For someone to just show him the unconditional love every child deserves was just priceless.We discussed his condition and she just reassured me that everything was going to be ‘alright’. I was not alone and were now in a family that had similar experiences and genuinely knew what I was going through. We finally had a place where we belonged.

As I adjusted to having a disabled child, the constant hospital visits, missed milestones, and stress of what the future may hold I knew I was not alone. Always greeted with a smile and the promise of a cup of tea, Little Miracles became a life line I could not imagine life without. It’s not just a place where we can go and meet up with similar children and parents…it’s an extended family where life can continue with hope for the future.

Alex spends a lot of time in hospital. This is usually due to being ambulanced in for life threatening situations. The Little Miracles Facebook page gives you 24 hour access to other parents and support staff at the charity who will always encourage and give you strength through the most stressful of times. Maybe even bring you in a bag of sweets or pop in to decorate the hospital room as was the case when we were stuck in isolation on two of my son’s birthdays. We have been ambulances to hospitals far from home but the Little Miracles family are only a mouse click away spurring us to ‘hang on in there’.

As time has gone on and Alex has got older I found myself scared to take him on any kind of holiday as the thought of him stopping breathing or being ill away from home was too much to bare. Little Miracles stepped in and sent me, Alex and my mum on a caravan holiday to Cromer. This not only made special memories we cherish but gave me the confidence to take him to away on a regular basis. This gives us something to look forward to on the days where things are really tough. They have given him birthday parties both in hospital where they snuck in and decorated our room and also at the centre where he could invite his friends. These things are what others may take for granted but they have been such major events for us.

Before I had Alex I had a long career in clinical research. This is something I have missed since he was born but the commitment to a full time job and the travel it required seemed so out of reach. Little Miracles has helped support me in ways I cannot possibly explain, they have helped me with training and education, with my mental health, they have been with me every step of the way over the last 7 years.

So when people say ‘what has Little Miracles done for you’? I would say ‘how long have you got’ or make them a cup of tea just and give them a big smile just like Michelle King did on my first visit.