CMN Belfast Marathon Relay Team
Adam Cree is raising money for Caring Matters Now
Participants: Hannah Cree, Robert & Sinead McGlone
Story
Meet Elijah Cree (21 months) & Jude McGlone (10 months).
On their behalf we will be fundraising for Caring Matters Now, a charity supporting families and research into a rare condition known as Congenital Melanocytic Nevi, which affects 1 in 20,000 children.
Elijah was born with a large black mark on his head, measuring 15x16cm. At first we were told it was a bruise, then a birthmark, and months later we were told it was CMN. Elijah now has 50-100 small marks all over his body, known as satellite Nevi. This condition causes hyper pigmentation of the skin- it is thought that the cell responsible for cell growth is 'stuck' ON, causing pigment to build and build.
It became clear then that this was a syndrome we were dealing with, and that there were other possible side effects related to CMN. With CMN there is a slight increased risk of melanoma, and to date every case of melanoma linked to CMN has been fatal.
There is also a neurological risk, that the hyperpigmentation would affect his brain and spine as well. Elijah underwent two MRI scans to determine whether the pigment was on his brain. The results showed that there was no pigment nor abnormalities on his brain.
Elijah is a healthy boy, he is full of gusto! But CMN proves to be N unpredictable and uncertain condition. Elijah is monitored 6 monthly in the ulster hospital, to ensure that his development is on course and that his marks are monitored for melanoma. Once a year we travel to Great Ormond Street London to see Dr Kinsler, a specialist in CMN, who is an expert in her field and leads research into the cause and cure of CMN.
On their behalf we will be fundraising for Caring Matters Now, a charity supporting families and research into a rare condition known as Congenital Melanocytic Nevi, which affects 1 in 20,000 children.
Elijah was born with a large black mark on his head, measuring 15x16cm. At first we were told it was a bruise, then a birthmark, and months later we were told it was CMN. Elijah now has 50-100 small marks all over his body, known as satellite Nevi. This condition causes hyper pigmentation of the skin- it is thought that the cell responsible for cell growth is 'stuck' ON, causing pigment to build and build.
It became clear then that this was a syndrome we were dealing with, and that there were other possible side effects related to CMN. With CMN there is a slight increased risk of melanoma, and to date every case of melanoma linked to CMN has been fatal.
There is also a neurological risk, that the hyperpigmentation would affect his brain and spine as well. Elijah underwent two MRI scans to determine whether the pigment was on his brain. The results showed that there was no pigment nor abnormalities on his brain.
Elijah is a healthy boy, he is full of gusto! But CMN proves to be N unpredictable and uncertain condition. Elijah is monitored 6 monthly in the ulster hospital, to ensure that his development is on course and that his marks are monitored for melanoma. Once a year we travel to Great Ormond Street London to see Dr Kinsler, a specialist in CMN, who is an expert in her field and leads research into the cause and cure of CMN.
Jude's story has similarities and differences highlighting how rare the disease is and the different approaches to treating it!
Jude McGlone was born on 28th April 2015 with what his Mum and the midwives thought was bruising. They were kept in overnight for blood tests and photos etc and before they went home he was diagnosed with CMN.
At the time the family thought it was a birthmark and that they could live with that. But as they found out more about it, fears crept in and it took a little while to get their heads around it.
Jude is being looked after by the Royal children's hospital and has check ups every three months . He is currently waiting on an appointment to visit Great Ormond Street for a check up there. He will get an MRI when he is over one and his parents are undecided at this stage about removal.
The CMN is classed as giant due to the percentage of his body is covers and it has got bigger since he was born, although it has got a lot lighter. His leg is very hairy and he has less fat under that part of his leg. The skin is also very dry so he needs to have cream applied at least twice a day, he is still too young to tell whether the skin is itchy. Jude's Mum, Sinead says she does worry about his future, as we all know the risks involved with moles, and also how he will handle the reaction of others when he starts school etc, but she knows that as a family they will teach him to love every part of himself as much as they do.
Caring Matters Now fund Dr Kinsler's job as well as the research she conducts. Not only that,
Caring Matters Now supports and informs families like ours faced with a rare disease.