Why we want to help

Cosima, my daughter has a haemangioma on her right check, 4 other external ones and one inside her stomach. A Haemangioma is a group of twisted capillaries that are extensive and protrude through the surface of the skin.

Cosima has been treated by the Birthmark Unit at Great Ormond Street since she was 5 weeks old, having sustained a massive bleed from the haemangioma on her face, which led to the surface being ulcerated. Cosima was treated with steroids for 10 months to control the rapid growth, as within 5 weeks it had grown from nothing, to a pin prick to being the whole of her cheek. It then began to grow over her mouth twisting her lips. It was also feared it would then grow on to her eye.

Cosima had a dressing on her face for almost a year, designed by Great Ormond Street, with multiple layers and antibiotic creams. They taught me this daily process and including cleaning of her wound with potassium permanganate solution, it could sometimes take 2 hours. To be able to undergo this process, Cosima had to be given morphine, due to the intense pain caused by the ulcerated surface.

Cosima also has reflux which is exacerbated by her internal haemangioma, located just at the opening of her stomach.

Cosima has had 3 laser operations, which are designed to accelerate the healing process and to give short term pain relief. Her condition and treatment was complicated when Cosima contracted MRSA twice, through the open wound in her face. This was not contracted at Great Ormond Street Hospital but at another hospital in the interim period. In total she has spent almost 3 months in hospital and she is only 19 months now.

The Birthmark/Vascular Anomalies Unit at Great Ormond Street, namely Professor Harper, Dr Samira Syed and Specialist Birthmark Nurse, Jane Linward, have treated and cared for Cosima, it has felt, as if she was their own. They have also gone beyond the call of duty whenever her care needed it. This included weekend visits by Jane Linward, to help me clean and dress Cosima's face, as at times it was too difficult to do by myself. She was and is also always there on the phone for advice or a shoulder to cry on.

Their specialist care has given Cosima quality of life, at times I never thought could be realised. The haemangioma on Cosima's face is now stable and starting to reduce internally. Haemangiomas do withdraw and it is said that 50% have gone by the time the child starts school. We do not preoccupy ourselves with a time span as we are just so thrilled that Cosima is well.

Cosima is now walking, running, laughing and trying to talk. She is calm and sensitive, funny and I feel very special. She has also displayed the level of bravery and dignity most adults would wish to achieve in their lifetime.

It is now our wish to help the Birthmark/Vascular Anomalies Unit to raise funds to buy the Cynergy II that could so dramatically assist children suffering from many forms of birthmarks, not just haemangiomas.

Pictures of Cosima

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