Our son has just turned 11 years old, and is a complete inspiration to not only his family and friends but to everyone who is involved in his care and well-being. What Marcus has had to endure, deal with and overcome is beyond what most adults would have to cope with in a lifetime.
Marcus was born with a genetic condition called Tuberous Sclerosis Complex (TSC), which occurs in just one out of 6,000 babies. It causes numerous non-cancerous tumours which means he has had seizures on a daily basis since birth. This has resulted in global developmental delay and learning difficulties. But not only has Marcus had to contend with this, there’s more…
When Marcus was four years old we were terrified we were going to lose him. Marcus had a 10cm abdominal aortic aneurysm (AAA), which is a swelling of the aorta – the main blood vessel that leads away from the heart down through the abdomen to the rest of the body. His case was just the ninth case reported worldwide and the first in the UK. Doctors define a large aneurysm in an adult as 5.5cm… Marcus’ was double that and remember he was only four years old, if it had burst, he would have died.
Fortunately he received lifesaving surgery at Leeds General Infirmary (LGI) and against all the odds stacked against him, thankfully he survived.
Seven years on we were back in Leeds fearing for Marcus’ life. This summer, we noticed Marcus’ health had generally worsened over a few months and he just wasn’t himself. We had taken him to our local hospital a few times and nothing major seemed wrong, but one weekend he deteriorated rapidly and he started vomiting blood. Panic soared through me and I rushed him to our local hospital in Bassetlaw, but they didn’t know where the blood was coming from so because of his previous heart condition they transferred him to LGI – just in case.
We were beside ourselves. We felt numb, anxious, afraid, nervous and confused. It felt like deja vu but we were comforted to know we were going back to LGI – the place that had saved our son’s life before.
Marcus was admitted onto the paediatric intensive care unit (PICU) where we were informed he had to be resuscitated twice before making the journey to Leeds and he was critically ill. Our world quite literally just fell apart there and then. The PICU team tried to understand what was going on with our little man and what was causing his problems. Up to yet we hadn’t given any thought to ourselves; Marcus was at the forefront of our minds, all we were concerned about was him. But then we remembered the last time we were in Leeds we were thankfully given a family room on the floor below the children’s heart unit as home was a good hours drive away. I asked one of the PICU nurses if there was anywhere we could stay, if not, we’d have to find somewhere but to be honest, we weren’t in any fit state, we were just about managing to do the basics. The nurse told us about Eckersley House, run by The Sick Children’s Trust, and said we could stay there for as long as we needed.
Eckersley House was a total godsend. We were literally just a few minutes away from Marcus’ hospital bedside and if the PICU team needed us during the night we could be contacted by a phone in the room which we found very comforting and so could at least try and get some rest. We had our own key so we could come and go as we pleased, day or night. The staff were wonderful and we made many friends with other families staying there. We shared stories of our children which, in a way, was lovely as everyone was in roughly the same boat so we could all sympathise with each other’s situations. We loved having a retreat where we could go and make a cuppa, re-charge our batteries and absorb the day’s events. We’d take this precious opportunity to inform family and friends of Marcus’ condition in private, cry or just have some time to ourselves. The facilities and staff were exceptional, we couldn't fault a thing. It was perfect.
We stayed at Eckersley House for ten nights while Marcus was ventilated and he was hooked up to a cocktail of medication alongside his regular seizure medication to help him recover.
After his stay in LGI, Marcus was transferred to Sheffield Children’s Hospital where he had to have a chest drain fitted amongst other things. Then finally, following nearly seven weeks of hospital life, Marcus was allowed to come home.
If Eckersley House had not been there, Paul and I would’ve had to find a hotel as close as possible as there was no way we would leave Marcus. We would’ve dealt with the expense at a later date. Thankfully we did not have that extra worry on top of everything else we were dealing with because of Eckersley House.
To this day, we still aren’t exactly sure what happened to Marcus or why it happened…..it’s a very complicated case. He is now under the care of seven consultants who are trying to get some answers for us but even if they do it will be a lengthy process. All we can tell you is Marcus had several blood clots, the larger ones were in and around his liver, lungs and heart which lead to pulmonary hypertension – we’re told this is why he was vomiting blood. He remains on daily heart medication and blood thinners as well as his anticonvulsants.
Marcus is now back to his normal cheeky self. He is walking again and can get around like he used to, although he needs his wheelchair for longer distances. He returned to school shortly after his hospital treatment. He loves swimming, playing with his toys, music, watching Thomas the Tank Engine, being tickled and chased after (when the mood suits him!) and being out and about.
He has totally blown everyone away with how far he has come in such a short space of time. To say we nearly lost him twice and to see him now, you wouldn't believe what he has been through. Nursing staff nicknamed him 'Marcus the Medical Mystery' and 'Marcus the Medical Miracle'….both of which are totally appropriate.
We have nothing but heartfelt thanks to everyone at Eckersley House. ‘We are here…. so you can be there’…. never has anything been so true.
Sarah Biggin & Paul Smith