In both 2015 and 2016, I ran a marathon (Belfast and London) to raise money for Caring Matters Now. 

This charity funds research into Congenital Melanocytic Nevi (CMN), a condition affecting my beautiful Nephew, Elijah who has just turned three. 

This year, I have opted for something a little less physically challenging; but more petrifying?!

This year, I have committed to skydive at Langar airfield, Nottingham on 02.09.17; as part of Caring Matters Now 20th Anniversary celebrations.

CMN is a type of birthmark that 1 in 20,000 babies are born with. Elijah's is on his scalp and measured 10 by 12 centimetres at birth. The midwives referred Elijah to paediatrics for further investigation but it wasn't until August 2014 that my sister, Hannah and my brother-in-law, Adam received confirmation of Elijah's diagnosis.

Very little is known about CMN. In fact, it has recently been added to a list of rare diseases!

Almost every CMN looks different to the next. They can be on any part of the skin, including palms, soles of the feet, scalp and sometimes, inside the mouth. At birth they are often black, but they can also be brown or reddish in colour. They usually grow hair, which can be darker than the rest of the child's skin/head hair; and as in Elijahs case when the CMN is on the scalp, its hair growth is usually more luxuriant!

MRI scans are routine if a baby is born with more than one CMN as they can grow internally, on the brain or the spinal cord. Luckily, Elijahs MRI came back clear! CMN can cause complications i.e. brain tumours, fluid on the brain or spine and can even develop into melanoma. All cases of melanoma to date have proven fatal.

All money raised by Caring Matters Now goes directly to Dr Kinsler's research fund at Great Ormond Hospital. Elijah now sees Dr Kinsler on a biannual basis. Dr Kinsler has identified the cause of CMN and now with our help is trying to find a cure!

Please help me to raise awareness of this syndrome and of the charity, Caring Matters Now, who have been a great support to my sister and brother-in-law.

Thank you for reading our story and kindly donating. Every penny helps!

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