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 admin@littlemiraclescharity.org.uk. We would love to hear from you.
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.
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.
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.
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.
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.