Our beautiful daughter willow was born April this year shes the most beautiful, amazing little girl we could have ever asked for ! Born with stunning port wine stains one of which in the shape of a giraffe covering her back and hips. 2 weeks into willows life a trip to hospital unveiled willow was a very special little princess, after her 1st MRI it was discovered she has complex vascular malformations and lymphatic malformations with fatty tissue hypertrophy to both legs, left being more severe. Willow also has lymphatic malformations and vascular malformations surrounding her bowel and rectal passage.

We have an amazing support system from several hospitals in the UK soon stretching right to London.

Myself and my husband want to give back for the help we are receiving but most importantly raise awareness of her condition so that hopefully when willow grows up more people will be aware of lymphoedema as everyone we speak to does not know of this condition.

Primary lymphoedema is caused by alterations (mutations) in genes responsible for the development of the lymphatic system.

The "faulty" genes cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should.

Willow has undergone genetic testing which showed she has a gene mutation in the pik3ca gene. This causes her to have pik3ca related overgrowth syndrome/spectrum, her symptoms are in keeping alongside klippel trenaunay webber syndrome and more. We cannot give willow a definite diagnosis as she has symptoms of various conditions under this spectrum.

She currently has one kidney larger than the other which is under close monitoring.

Very recently her lymphedema in her back has begun to swell also.

This is just the beginning of a big adventure for us and Willow.

All proceeds will go to St Oswalds & The Lymphoedema support network.