Parents of a five-and-a-half month old baby living with lymphoedema have opened up about what it’s like to have a baby living with the condition and praised the support and treatment from our Lymphoedema Team.
Karen and Kris Diamond first noticed that their baby Willow, also known as ‘Wonder Willow’ had symptoms of lymphoedema when she was two weeks old. She has lymphoedema as a symptom of a rare condition called Klippel-Trenaunay Weber Syndrome.
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 our Lymphoedema Clinic, 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. Karen, Willow's mum, said:
“When Willow was just two weeks old, we first noticed a lump in her leg; it used to burst and have fluid coming out of it. At two months old she was diagnosed with lymphoedema in both her legs and is now having tests for lymphoedema in the gut because she has blood in her stool.
“She’s only five-and-a-half months old but needs a lot of treatment, including bandaging and compression for her legs because they are really swollen. The team at St Oswald’s has also taught us treatment techniques so we can help Willow at home, such as massage to help drain the fluid from Willow’s legs. Because Willow’s lymphatic system doesn’t work very well we have to do this twice a day otherwise her skin can be really hard and coarse.”
To thank the team who support Willow, her family is fundraising for St Oswald’s Hospice and national charity the Lymphoedema Support Network.
“I was surprised when we were referred to St Oswald’s for this sort of support as I thought they only provided end of life care but I couldn’t have been more wrong. From our first visit the nurses have been so lovely and they do all they can to put Willow at ease, even blowing bubbles in the treatment room! We are already seeing the benefits of treatment and we have a lot of trust in the nurses who are specialists at what they do.
“As I’m currently on maternity leave I have some time to spare so I am putting a diploma I have in makeup to good use and I’m beginning to start offering my services to raise money. All the money from clients is raised for the two charities supporting us - St Oswald’s Hospice and the Lymphoedema Support Network.”
Kris, Willow’s dad, added:
“Karen has done so much research on Willow’s condition and often when we go to the hospital people ask if she had a medical background because she knows so much. I am so proud of her, she’s done so much with her makeup diploma whilst having a baby and going to all the hospital appointments. We want to do everything we can to raise money for St Oswald’s to say thank you so we are planning lots of challenges including climbing Ben Nevis and the Great North Run next year.”