'You have to develop strength and resilience'
Rachel Hughes said Jack was "loving and wonderful"
- Published
"When you have a child with special needs, you do go through a grieving process," says a Jersey mum, who is raising child with a rare genetic condition.
Rachel Hughes' eight-year-old son, Jack, has Sotos syndrome - a condition which affects about one in 14,000 children that causes overgrowth in childhood, developmental delay and learning difficulties.
Despite his young age, Ms Hughes said her "loving and wonderful" son was about the size of a 14-year-old, adding: "He's also got epilepsy, autism and behavioural difficulties."
She said: "You have this relentless hope that things will be okay, that you can create the best life you possibly can for them. It's such a mish-mash the whole time of joy and then drama and then love and then grief for what could have been."
'A cocktail of love, grief, hope and overwhelm'
Listen to Rachel Hughes talk about life with her son
She added: "It's confusing but it's just part of the special needs journey."
Ms Hughes, who runs a photography business, studied biology at Oxford University before having Jack.
"When we had Jack, it became quite clear that he was very poorly," she said.
She said she set her sights on photography as a form of "escapism" after having her son.
She said: "I decided to make the move to step away from my big corporate role. It was clear I just couldn't have a full-time job when I had a child like Jack".
She said the condition had a wide range of effects on Jack's life, including that he "can't really talk".
Ms Hughes, who has three children, said Jack was often admitted to hospital for treatment due to his epilepsy.
She said: "When the seizures happen, they can be quite big. It never gets easier.
"You have to stay calm throughout and we have to call an ambulance sometimes.
"I think you have to develop strength and resilience as a parent because, when you have a kid with special needs, medical emergencies do happen."
Despite the challenges he faced, Ms Hughes said Jack was warm, affectionate and funny.
She said: "Jack is so, so loving and wonderful. He has an absolutely amazing sense of humour.
"He loves to make people laugh… he adores adult company."
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