I'm Maria, mummy to George and Louis.
George, our first born, was born on the 8th March 2020. I had a very healthy pregnancy. The only sign something might not be right was around the 36 week point, when our midwife noticed his growth seemed to have stalled. So with confidence that it was just a normal scan check we weren't worried. They picked up his head looked a bit small, on the 2 percentile line, but the consultant reassured us that due to him being engaged already, it was probably nothing to worry about, but that he would come and check him at birth. So we were sent on home to get ready. The following few weeks seemed to take forever. And on my due date at 1am, my waters broke. 24 hours later... still no sign! But then at 3.10am he appeared! We were overjoyed to have started our family. He was eating, breathing and doing everything normally at birth. The consultant noted he had a small head and a bit of a small chin, but overall was not concerned and that we'd be seen in 10 weeks for a check-up. After a couple of nights stay in hospital, we were off home. The first couple of weeks were lovely, but then the dreaded covid lockdown hit; my lovely plans went out of the window and we got used to pretty much staying at home to keep George safe. The health visitor checks didn't happen in person but as all seemed OK and we weren't overly bothered. The 6 week check-up with the GP wasn't allowed to go ahead, so we had to wait until 8 weeks! But about 6 weeks, we noticed George's head didn't seem to be growing and some ridges were appearing. So remembering the amazing consultant at the hospital telling us to phone if we had any concerns, I did. He got back to me within a couple hours and said "I've got space tomorrow". The doctor agreed all didn't seem 100%, and asked why we hadn't seen the GP; we explained that they had refused to (he was very angry and said he would follow-up)! He also agreed we needed a CT scan on George, to check what was going on. So the following week, off we went for a CT scan and it was the scariest thing I'd ever had to do; to feed him, tightly wrap him and then just leave him alone in a big scanner! The results took what felt like a lifetime. We eventually received a call to say the skull was fine, which the doctor was more concerned about, but something abnormal had shown up on the brain and they wanted him to have an MRI, which meant more scary moments! So that was booked for a couple weeks time. Then one morning, George started doing a very strange mouth and eye shake! I rang the doctor and explained what had happened, he said if he does it again to try and film it and then head straight to A&E. We went about our normal day, and had gone for a lovely walk in the May sunshine (covid restrictions had just been lifted to go for walks with people outside your household at this point). We got home afterwards and put him down for a nap, but about 10 minutes later, he started doing a full body shake and it looked very scary. I managed to film most of it. When it stopped, I rang my partner and told him I was taking him to A&E and off we went. On arrival I was told it would be one parent only due to the COVID restrictions... I was a mess but stayed strong for George, and Simon waited in the car. After what felt like forever, we finally saw a paediatric doctor who told us it looked like a "tonic clonic seizure" and that he should probably be admitted overnight for observation.
He ended up having 4 more tonic clonics during our stay, so they started him on some medication. We were sent home following a first aid course in baby safety and a plan on what to do. His MRI followed and the results came back that he had Lissencephaly. A condition which generally comes with a life limit of 10 years old. We were told to prepare for a child who would have learning difficulties, seizures for life and other developmental delays. Our doctor then wanted to find out what had caused this, as I had had such a healthy pregnancy. So after lots and lots of testing and both mine and my partner's genetics also being reviewed, we finally got the results in September 2020... George had a condition known as Galloway-Mowat Syndrome, a recessive genetic condition which has been diagnosed in less than 200 children across the world. But it meant he would have kidney failure and his life expectancy was drastically reduced to 2 years old! We were in shock to say the least, but grateful we had a cause. It also meant if we had other children, they could be tested during pregnancy (there was a 1 in 4 chance it could happen again). We went through a massive grieving process early on, experiencing anger, severe guilt and extreme pain that we would never experience certain firsts.
George was a fighter though, and taught us so much about how to deal with things. We also had to fight for him as he couldn't communicate, he mentally was still a 3-6 month old, so couldn't do much physically either. He eventually had a feeding tube, where we came across a small business called Tubie Cheeks; who did amazing tapes to brighten up his little face.
He was so strong and took everything in his stride. We built up a close relationship with the many amazing nurses at our local hospital and they didn't just help George, but myself and his Dad, on many occasions, get through lots of scary times.
George died very peacefully in his sleep on the 15th August 2021, cuddled up in my arms in hospital.
Following his death, I wanted to do everything to honour his memory; we have raised money for our local children's hopsice, as well as other local charities who helped us. We then also donated several gifts, as well as the tapes, to the children's ward and each Christmas we drop things off to nursing staff who have looked after us, in thanks.
We found out we were expecting our 2nd baby, a couple months after we lost George, and that is when I came across Soxsies via Tubie Cheeks and the koala ones were screaming out to me! Georges condition meant he had a smooth brain and koalas survive with a smooth brain. So they mean alot to the Lissencephaly Children's community! So I had to get them! We also got several others and they have been a godsend for a very active Louis George who constantly loses socks! The amount of odd socks we now have flabbergasts me!
George will forever be with us. And we will tell Louis all about him and how strong he was. He also brought me a community of friends who understand! And I will continue to help and support other families where I can as well as keep fundraising in his honour and memory.
