“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”

 

"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!! 

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.

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.