‘Our bodies are destroying us’ – brave mum and daughter battle genetic disease

Sharon Henry and her daughter Zoe Pelling, who suffer from neurofibromatosis.
Sharon Henry and her daughter Zoe Pelling, who suffer from neurofibromatosis.

A BRAVE mum and daughter are living with a severe debilitating condition that they say is slowly destroying their bodies.

Sharon Henry and her daughter Zoe Pelling have Neurofibromatosis (NF) type 1, a genetic disease which sees their bodies covered in painful tumours.

Sharon Henry and her daughter Zoe Pelling with Sharon's partner Bob Sales.

Sharon Henry and her daughter Zoe Pelling with Sharon's partner Bob Sales.

The agonising pain of a tumour has forced Sharon to have her right leg amputated from below the knee, and both suffer from learning difficulties as part of the illness.

The pair have gone through so much in their lives.

But they are on a mission to raise awareness and to launch a support group for other sufferers.

Sharon, 49, of Lynn Street, Hartlepool, spent half her life not even knowing she had NF until she was diagnosed in July 1989.

Disfigured by the coffee-coloured tumours, Sharon grew up being called names and stared at, “just because I looked different”, she said.

She has had numerous operations on her tumours over the years, including one on her spine.

When she got pregnant with her first child, Emma, now 30, the tumours became more aggressive.

She started getting bad headaches and neck pain after Emma was born and a doctor told her she had NF, although at the time it was wrongly thought it as a type of cancer.

Shocked Sharon was given a blood transfusion and sent home.

Daughter Emma has type 1 and son Ben, 28, has type 2, which is less common and sees tumours affect hearing and balance.

Eventually Sharon was told the condition was not a form of cancer.

Sharon found a new partner and in December, 1993, Zoe was born.

She said: “We decided to have a baby, but we had done our research on NF and the risks involved and thought we knew what we were getting ourselves into.”

Catcote Business and Enterprise College student Zoe was born, weighing 4lb 4oz, but Sharon almost lost her at birth.

At just eight months old, Zoe was rushed to hospital after having an epileptic seizure.

Sharon said: “From that day her development has significantly slowed down and she struggled to speak, walk, sit up and do other things that a child should be able to do at that age.

“Walking was made difficult by a tumour in her foot, she kept having seizures, up to 12 to 13 a week, and we were in and out of hospitals on a regular basis.”

In 2002, Sharon, originally from Croydon, London, had to have a tumour removed from her hand as biopsy results revealed cancer cells.

In 2005 Zoe almost died after having a bad reaction to a wasp sting.

In 2008 Zoe had an operation to remove a tumour from her ear.

Zoe was also meant to have the tumour on her foot removed, but she almost died after a scan revealed blood was collecting behind a tumour behind her ear, almost “drowning her”, said Sharon.

She underwent surgery but spent 11 days on a life support machine before being allowed home.

Now Sharon wants to raise awareness of the condition to offer a support network.

Sharon, who moved to Hartlepool with her partner Bob Sales and Zoe in 2011, said: “My goal is to raise awareness for Neurofibromatosis and make friends on the way.

“We really need a good support network for people suffering from NF.”

Other sufferers can call Sharon on (01429) 863110, email henry@henrysharon57.orangehome.co.uk or visit: www.hope4nf.simplesite.com