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Our Families' Stories

We are lucky enough to support some incredible children and their families at Little Miracles. Some have been kind enough to share their stories. If you would like to tell your family's story and show others what Little Miracles means to you please email us at We would love to hear from you.

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  • Michelle and Oliver's Story

    Published 15/02/24

    "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.”


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  • Fergus and Jess' Story

    Published 15/02/24

    “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


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  • Alex and Delilah's Story

    Published 15/02/24

    “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.”

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  • Aaron and Alpa's Story

    Published 14/02/24

    "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!! 

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  • Meet Penny

    Published 28/02/23

    Penny was struggling emotionally to support herself and her two children, both of whom have disabilities. 

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

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  • Meet Kelly

    Published 11/09/22

    When Kelly found out her daughter's birth mother had drunk during her pregnancy causing her child to have Foetal Alcohol Syndrome her world fell apart.  Little Miracles was there to help her.

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  • Meet Eva and her family

    Published 09/09/22

    When Eva was diagnosed with a cancerous brain tumour her family's lives fell apart. Little Miracles was there to help them pick up the pieces.

    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?

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  • Lauren's Story

    Published 15/08/22

    Hello, I'm Lauren, a volunteer and family of Little Miracles. I am a Mum to 3 and this is my story.

    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.

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  • Alex and Samira's Story

    Published 28/07/22

    Alex is an active seven-year-old who is full of smiles and laughter. His condition is genetic and life long. He has a deletion, duplication and translocation of various chromosomes. There is no one else with this condition so Alex is a SWAN (syndrome without a name) this has led to epilepsy, reflux and severe developmental delay.

    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.

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