Esmé
Eighty miles away in Norfolk, around the same time Seraph starts treatment, Wendy discovers that her one-year-old, Esmé, has developed a rare brain tumour. Esmé is the youngest child of four. Her older siblings are 3, 6 and 14.
Wendy has been studying for a BA in counselling and her husband, Aaron, is a self-employed painter and decorator. Esmé’s diagnosis shatters their world.
Aaron gives up work to care for their eldest three children, while Wendy gives up her studies to make the frequent trips to hospitals.
Over the next 19 months, Wendy travels to and from Addenbrooke’s over 200 times. Each return journey is more than 100 miles long.
Not counting the trips caused by temperature spikes, Esmé also has to make weekly visits to the Queen Elizabeth Hospital in King’s Lynn. That’s more than 80 visits of over 30 miles each time.
In less than two years, Esmé and her family travel over 14,000 miles for specialist medical care. That’s five times the distance from Los Angeles to New York.
Each trip costs £20 in parking and petrol, which leaves very little for the family to survive on. Without a regular source of income from either parent, they just about manage to pay their monthly rent. And because their car is in constant use, it needs new tyres and maintenance. That’s another £2,000 for them to whip up out of nowhere.
By day, Wendy and Aaron do the best they can for their children. By night, they write funding applications to charities and trusts, hoping for a break.
For two years, they live in a constant state of stress over the welfare of their children and their untenable financial situation. And who knows what impact all this will have on their own precarious wellbeing.
Their loved ones organise a fundraiser that will help the family for the next two years. But not everyone is lucky enough to have such a network of support.