Belfast Telegraph

Belfast mum's marathon effort for son whose scalp tears like paper due to rare illness

By Angel Rainey

An east Belfast mother will be pounding the tarmac to raise money for her son, who has a skin condition so rare only five people here have been diagnosed with it.

Hannah Cree (27) will rely on her physical reserves to raise funds for Caring Matters Now, a London-based charity that supports congenital melanocytic naevi (CMN), a condition that resembles a birthmark but can lead to cancer and autism.

Her son Elijah, who was born with CMN, will celebrate his third birthday after his mum completes her leg of the relay in the Belfast Marathon on May 2.

Very little is known about the condition that affects just five people here, seven in the Republic and one in 200,000 people across the UK.

While it is caused by a mutated gene, CMN is not hereditary.

"When Elijah was born we could clearly see the mark on his scalp," said Hannah, also mum to three-year-old Ari'Ela. "It was a patch about 10cm by 12cm.

"The midwife thought it might be bruising as he had been lying on my pelvis, but just before they discharged us they said they were happy that it was a birthmark. In the August a paediatrician suggested CMN.

"It carries a higher risk of cancer, like a brain tumour in Elijah's case, especially where the naevi (dark marks) are. They said Elijah would have to have an MRI scan to see if there was any neuroblastoma, a form of pigment, on his brain." Elijah was three months old when he underwent his first scan, the second coming at six months. Luckily, it came back clear.

The mark on Elijah's scalp has now expanded to 15cm and is expected to reach up to 40cm in adulthood. And while he was born with just five small CMN spots on his body, the number has since grown to 100.

The naevi are not believed to be painful, but they can darken, grow hair four times quicker than anywhere else on the body, and become itchy.

Although his condition is masked by thick, luxurious hair - a symptom of the condition - there is no fatty tissue under the skin of his scalp, leaving it prone to being torn like paper at the slightest of touches.

"He has a five per cent higher risk of skin cancer than people without CMN," added Hannah. "And he also has a higher risk of allergies, Asperger's and autism.

"If he goes outside he needs factor 50 sunscreen on, and though he knows that he has special skin it doesn't stop him having fun.

"His scalp is also prone to being painful, so we have to be careful when he is playing as his skin is thinner and more prone to damage.

"We have to be careful with things like soft play areas, where the other kids can bump into him, as a scratch from a fingernail would really cut him.

"We talked about buying him a helmet to protect him when he plays with other kids, but we thought that we would try to keep life as normal as possible for him.

"He's such a typical crazy, boisterous little boy and we want him to have fun.

"But we just need to keep a close eye on him."

Hairdresser Hannah and husband Adam (25), a marketing director, are both devout Christians and believe their faith has kept them strong to give Elijah - who loves teddy bears and Batman - a happy upbringing and to help raise awareness of the little-known condition.

They have been supported by friends at the Exchange Church in east Belfast, some of whom are also taking part in the marathon.

In the hope of raising more money, Hannah's sister Rachel Hutchison (30) will be running the London Marathon on April 24 in a bid to beat last year's total of £12,000.

Donations can be made online.

Belfast Telegraph


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