Family of wonder baby thank hospice for lymphoedema management

Karen, 28, and Kris Diamond, 36, of Gateshead, first noticed that their baby Willow, also known as ‘Wonder Willow’ had symptoms of lymphoedema when she was two-weeks-old.

Willow, who is now five-and-a-half months old, has lymphoedema as a symptom of a rare condition called Klippel-Trenaunay Weber Syndrome.

Klippel-Trenaunay Weber Syndrome is a condition characterised by three main symptoms; a port-wine stain birthmark; swelling, also known as lymphoedema excessive growth of the limbs and/or bones and vascular malformations.

Although Willow was born with the symptoms of lymphoedema, which affects around 200,000 people in the UK, it wasn’t diagnosed until she was two-months-old. Willow was referred to St Oswald’s Hospice, a national centre of excellence for lymphoedema treatment.

Willow’s parents want to raise awareness of lymphoedema so that more people are aware of the condition that often goes undiagnosed and misdiagnosed. Willow’s mum, Karen, said:

“When Willow was first born we were back and forwards to our GP and hospital quite a lot. Apart from one specialist at hospital who diagnosed her lymphoedema right away, other healthcare professionals misdiagnosed her condition, and didn’t know much about it.”

Lymphoedema is a condition that cannot be cured but can be well managed. For treatment of the condition, Willow attends St Oswald’s Lymphoedema Clinic. Because Willow is so young it’s still too early to tell how it will affect her as she gets older.

To thank the team who support Willow, her family is fundraising for St Oswald’s Hospice and national charity the Lymphoedema Support Network.

To find out more about lymphoedema and St Oswald’s Lymphoedema Service visit ttps://www.stoswaldsuk.org/lymphoedema-service

You can follow Willow’s journey at www.instagram.com/wonderwillow19. To make a donation to the Diamond family fundraising page visit www.justgiving.com/crowdfunding/karen-cook-4