Family of Newport girl with rare skin condition on pain of diagnosis
Six-year-old Willow Gittins is one of 25,000 people in the UK with Neurofibromatosis Type 1.
The genetic condition causes non-cancerous tumours to grow along nerves and in the skin.
6-year-old Willow Gittins who has Neurofibromatosis Type 1 (Image: Carys Gittins) It can lead to health complications later in life and increases the risk of other types of cancers, including brain tumours and leukaemia.
Currently Willow is enjoying a relatively normal childhood, and the condition presents itself only in the form of cafe au lait spots.
However, there is no cure for the condition and Willow's future is uncertain.
Willow's café au lait spots typical of Neurofibromatosis Type 1 (Image: Carys Gittins) Speaking about her diagnosis journey, Willow's mum Carys, 38, said: 'Back last July, Willow had an operation on her eyes.
'She had a turn in both eyes and a consultant said to us that she had lots of café au lait spots.
'They also saw she had lesions in her eyes and told us she had NF1. I was frantic on Facebook researching.'
Willow's family at the top of the Skirrid. Mum Carys 38, Dad Louis 37, sister Grace 16, brother Finley 10, and Willow 6 (Image: Carys Gittins) While coming to terms with the shocking news Carys came across the charity Childhood Tumour Trust.
She added: 'They've been an amazing support network for us any questions we've had they've come back to me.
'They do weekly craft packs and zoom sessions, cooking events, and for the teenager's summer camps in the UK.'
She added: 'We are going to Alton Towers in July with them to meet other families.
'We can talk to see how it's affected them if it's affected them.'
Willow climbing the Skirrid on World NF1 Awareness Day (Image: Carys Gittins) On May 17, Willow's family marked World NF1 Awareness Day by completing a hike of the Skirrid mountain near Abergavenny.
The family set up a GoFundMe, with all proceeds going to Childhood Tumour Trust.
Carys said: 'We wanted to give something back to them.'
The GoFundMe reads: 'It's not a very common or well-known condition.
'The Childhood Tumour Trust have already done so much for us. The biggest part is the support they provide us.'
A whopping £2,810 was raised in total.
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