Rare Disease Day - 28th February 2015

Leah’s Story

Leah Wigmore – by Mum Lynne

Leah's StoryOur daughter Leah was born 16th June 2005, at Frimley Park Hospital and from the very first moment we laid eyes on her, we knew she was special. It looked as though she was born with a full head of hair, but it turned out to be a CMN, which covered some of her forehead and scalp, as well as “satelite naevii” all over her lower body.

We referred to them as her beauty spots. Within days of her birth, we were referred to GOSH and we first met Dr Veronica Kinsler.

Over the next couple of years, Leah had 6 monthly checks for her eyes, brain and skin abnormalities, but all was fine apart from a few lumps being removed. Her next 4-5 years were care free and all was well.

Leah was a bubbly, confident and outgoing girl, who everybody loved. School was made easier by her wealth of good friends that she made. Leah could light up a room, as soon as she walked in and many, many people often commented on how beautiful she was. On family trips, strangers would stop us and comment on her stunning looks. One of her best qualities, was the fact that she was a “straight talker” and said exactly what was on her mind, however good or bad her assessment was!! This gave us many a laugh over the years and her brutal honesty was Leah all over. She loved to sing and dance and was a member of various different dance clubs, which gave us great pleasure in watching.

Near the end of 2011, Leah was booked in for a “tissue expansion” operation, to remove a large portion of the CMN on her head, because a large lesion had grown on the centre of her head. The initial operation went well and was a huge success. 2 months of expanding went well and the reversal operation was booked in. However, just before the reversal operation, a lump grew in her neck and they decided to remove the suspicious growth during the reversal operation. Unfortunately, the lump turned out to be Melanoma and our world was shattered!

Over the next 7 months, Leah had weekly visits to GOSH, for trial treatments and experimental drugs, because Leah’s cancer was as bad as it could get. But on the 31st July 2012, Leah lost her battle with cancer, despite the best efforts of doctors and specialists at GOSH. Our beautiful daughter displayed bravery beyond her years, throughout her illness and we will be forever proud, to call her our little girl.

Since Leah’s death our family and friends have worked hard in raising funds to support the CMN research. Although Leah is no longer with us, her legacy will live on through the efforts of many good people who help to raise much needed money for Dr Kinsler’s research.

A heart-felt message from Jodi Whitehouse…

I am overwhelmed by the incredible unity our CMN members, families and supporters have within Caring Matters Now. What an amazing journey we have been on over recent years, with such dedication in raising funds to continue the CMN research… Dr Kinsler and her research are priceless!

We have just read from Diane, Lynne and Justin of the devastating reality in losing their beautiful daughters, Hannah and Leah, as a result of Congenital Melanocytic Naevus. We MUST continue to fund the CMN research! We have found the CAUSE now we must find the CURE. A cure will save lives. Please click here to support.

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