Wirral mum with rare genetic disorder causing tumours to grow on her nerves organises charity night to raise awareness

Oct 17 2012 by Lorna Hughes, Heswall News

A WIRRAL mum living with a rare genetic disorder that causes tumours to grow on her nerves has organised a charity night to raise awareness of the condition.

Kaydie MacKay, from Woodchurch, was diagnosed with schwannomatosis in May, six years after doctors first found a tumour on her arm.

She has since had tumours removed from her knee, spine and both arms and is waiting for surgery to remove another on her sciatic nerve.

The condition has left the 25-year-old in constant pain and with weakness in her arms and legs – but she is determined to help others.

Kaydie, an appointment co-ordinator at Arrowe Park Hospital, said: “It was a bit of a relief to finally find out what it was but I was also devastated and concerned about what it would mean for my children.

“When I had them I obviously didn’t know they would have a risk of having schwannomatosis and I don’t want them to have to go through the same pain.

“No-one else in my family has it so it looks like it’s started with me.”

Kaydie’s charity night will take place at Cammell Laird Social Club in Rock Ferry on Friday (October 19).

Admission is £3 and proceeds will go to the charity Jeans for Genes. Everyone who attends will receive a Jeans for Genes badge, which normally cost £1.

Kaydie, who lives with partner David and is mum to Archie, five next month, and Marcy, three, said: “The more money I can raise for research the more they can help my babies when they’re older and other people who might be affected.

“It would blow me away if we could break through the £1,000 mark but mainly I want people to be aware of schwannomatosis.

“It is a horrible condition. I’ve probably got a tumour at the moment on my sciatic nerve which sometimes makes my leg spasm. It aches constantly and it can feel like an electric shock going through my leg.

“It’s difficult. I can’t play with the kids the way I should be able to and I can’t run after them. I’m 25 but sometimes I feel more like an 85-year-old because of the damage it’s caused.

“My children are so understanding at such young ages. They know when mummy is having a bad day and they’ll ask if they can help rub my leg better.

“They’re my rock.”

For more information – or if you can help donate raffle prizes for the charity night – call Kaydie on 07738923769.