Freddie is five years old. He has Tuberous Sclerosis Complex (TSC), a genetic disorder that results in the growth of benign tumours in parts of the body. As mum Lottie explains, “TSC means that Freddie has spontaneous tumours growing in all of his internal organs. His brain, heart, kidneys, eyes and skin are affected.”

The effects of TSC are wide-ranging. “The tumours in Freddie’s brain cause epilepsy, autism with pathological demand avoidance (PDA) traits, attention deficit hyperactivity disorder (ADHD), and challenging behaviour. There is no cure for TSC, so we can only treat the symptoms.”

Daily challenges for Freddie and his family

Lottie tells us that due to Freddie’s condition, he struggles with following commands. “On top of managing his focal seizures, Freddie has a severe learning delay and can’t follow commands as it send him into a severe anxiety panic.” Focal seizures refers to a seizure that begins on one side of the brain. “We have to communicate with him in a very specific way, with low or no demands, always offering options so he feels in control. If we don’t it can lead to a severe meltdown.”

Because of Freddie’s autism and ADHD, his behaviour is both complex and challenging. “This has led him to being excluded from mainstream nursery and reception, and we had a period of nine months without any school.”

The impact of Freddie’s condition

Lottie explains that it’s been a difficult process trying to get Freddie back into school. “We fought hard with the local council, but

 thankfully we have now managed to get him into a fabulous Special Educational Needs (SEN) school.”

Freddie’s condition requires constant medication and regular hospital appointments. “Freddie takes three epilepsy medications, medication for his ADHD and melatonin to help him sleep. We have an annual MRI to check that the growths in his brain are stable, and a specialist for his heart, kidneys, eyes and skin. We’ve had input from the Positive Behavioural Support Team which has been really helpful.”

The impact of Freddie’s condition has also meant that Lottie has had to give up work. “It put a huge financial pressure on my partner, and inevitably we fell into debt. I have to take anxiety medication as I was experiencing panic attacks and palpitations. My partner has been through extreme stress and depression.”

Our life is unrecognisable from what it was. There isn’t one area which is unaffected.

"The social isolation is the hardest as we can’t join in with the usual things our friends and family do. It’s caused huge strain on our relationship too, as we no longer have time together as a couple.”

How we helped

Lottie tells us that she found out about Family Fund “through the Tuberous Sclerosis Mums and Dads Facebook group.” Since 2016 the family have applied for three family breaks. “We have twice been to Cornwall for a Haven break, and last year we applied for an Inspire family break, and went to Portland Bill in Dorset.”

How it’s made a difference

“We can’t afford a break on one salary, so the grants from Family Fund have given us the chance to get away together and have a change of scene. We can experience new things as a family and make new memories.”

“The challenges of Freddie’s condition are still the same when we’re away, but we now ask family members to come with us, to provide and extra pair of hands and for company too.”

“It’s really important to have something to look forward to, and Family Fund gives us that.”

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