Freddie was born a week early; I had a normal delivery and a normal birth.
At three weeks old he had viral meningitis, which left him in hospital for about a week. After that he wasn’t very well really and had lots of bronchiolitis and just had a really poorly six months. Then it became apparent that all his milestones were very delayed; everything from smiling, walking, sitting - all of them were significantly delayed and we started getting help from outside organisations.
From age two and a half, he started showing traits of autism. He lost all his words and became very distant; it was almost as if he was in a bubble. It was like losing your child’s personality overnight. He had a big regression socially and verbally.
There were lots of investigations and then at about age 4 they said ‘we think he’s got a rare metabolic condition called Mucolipidosis Type III (ML3)’ which is a very rare lysosomal storage disease and is progressive. It’s a bone and joint disease and there’s no cure for it. Not many people in England have been diagnosed with it at all, maybe 5 or 6. However, they said that wasn’t likely to be the reason for his developmental delay so there must be something else going on that they hadn’t found yet.
Freddie started having periods of fainting and low blood sugars and was diagnosed with ketotic hyperglycemia, which is another metabolic condition, which seemed to be unrelated.
He stayed in for hospital 12 days and had another two seizures. Freddie then started to have seizures monthly thereon, so was given additional epilepsy drugs. However, his seizures continued to worsen - they could be anything from 20-mins to two and half hours. Three times he went into intensive care because we had tried all the emergency meds but we just couldn’t stop them. They tried everything to stop the seizures but couldn’t so eventually they had to shut the body down and put him into a self-induced coma
Eventually it was suggested he have a PEG fitted, which I was hesitant about because he’s so hyperactive and into everything, I didn’t think he’d cope with it. This year we’ve had it converted to a Button and it’s been a Godsend. Freddie is nil by mouth by fluids, which is part of the ML3 and he’s not had a big seizure now for 5 years.
When we were first introduced to Charlton Farm, Freddie’s brother, Joseph thought it was like a Center Parcs.
I think a lot of people when they hear the word ‘hospice’ certainly don’t want to think about it, but it’s respite really. For most people it’s respite and having nurses there 24 hours a day and people who can help. When I used to tell my friends we’re going to the hospice, they would ask ‘is everything alright’? But I would say we’re going for some respite, some family time and chill time and we’re able to pass over the care of Freddie.
Over the years, both Freddie and Joseph have loved visiting Charlton Farm. There’s nothing not to love. The staff have always been unbelievably accommodating. When I used to visit, having Freddie cared for allowed me to dedicate my time and efforts to my other son, which was really important. There’s no washing, no cooking, very little signal on my phone, no paperwork, no jobs to do. I can pick up a magazine, get in the bath, uninterrupted - and I just could never do that at home.
Whenever I used to visit Charlton Farm, it became my downtime.
I never had to worry about medications or that Freddie is having water six times a day. And being able to go out with just Joseph and not have to take oxygen, emergency medications, the wheelchair - the whole entourage was just such a relief. To know Freddie has always been well cared for has been reassuring. I know if the worst ever happened here, everyone would know what to do.
It’s lovely to know you can come to Charlton Farm, where it’s calm and peaceful and you’re so supported, it’s like having a big, comfortable warm blanket around you. People are here to help and hug; it’s wonderful.
Although we do not visit the hospice frequently now, the nurses do come and take Freddie in the school holidays as this time can be a real struggle for me. Fred is 2 to 1 in every other setting so I do struggle with his strength and teenage defiance. His ADHD is a lot more prominent than it was in his younger years, so when the staff do visit Freddie it has been really helpful.