How we saved Poppy from the curse of Huntington’s disease

http://www.echo-news.co.uk/news/9156675.How_we_saved_Poppy_from_the_curse_of_Huntington___s_disease/

8:00am Monday 25th July 2011
Family happiness – Mike and Tina Nevill, with baby Poppy, who has evaded Huntingdon’s disease

A COUPLE who faced an agonising quest to find out if they might pass on a debilitating genetic disease to their children have been spared the ordeal thanks to a pioneering form of fertility treatment. When Tina and Mike Nevill decided to start a family, they knew they might pass on Huntington’s disease, a hereditary neurological disorder.

Tina’s father Stephen Waller has the disease, which causes certain nerve cells in the brain to waste away, slowly impairing a person’s ability to walk, talk, think and reason. Tina, 31, has always chosen not to be screened for the disease, but when she and Mike, 38, started planning their family, she decided she needed to have the test.

However, when the couple went to see a specialist to arrange the test, they were told they could try a form of fertility treatment which would screen Tina’s eggs and exclude all the chromosomes from her father’s side, meaning the disease couldn’t be passed on. Happily, this procedure also meant Tina wouldn’t have to find out if she too has Huntington’s.

After undergoing the screening called pre-implantation genetic diagnosis, she fell pregnant and the couple welcomed baby Poppy in February this year.

Veterinary nurse Tina said: “It’s lovely to know Poppy won’t have to worry about it. “We’ll talk to her about it in the future, and will explain it to her when she can understand, but it’s such a relief and a weight off your shoulders to know we don’t have to worry for her.”

Tina, who lives with insurance clerk Mike in Linden Close, Canvey, has known since she was a teenager she could have the condition after her dad, now 57, was diagnosed with Huntington’s in his mid-forties. He was tested because his own father had the condition.

Tina said: “He and his two sisters had the test, and his was positive and his sisters’ were negative. Shortly after that, he started showing symptoms. Dad doesn’t do too badly and can still live by himself. We’re just in the process of getting him carers to help him through the week with things like his meals. He still copes, but he is now in the mid to late stages. He can still walk, but it won’t be long before he will need a wheelchair.”

Having seen what the disease is doing to her father, Tina knew she would have to make a decision about knowing whether she has Huntington’s or not shortly after she married Mike in 2007. Tina said: “We went up to a neurological hospital in London and I said I wanted the test. The consultant asked why, and eventually changed our minds on it because she explained there were other options available.” After deciding to try the fertility treatment, Mike and Tina were referred to Guy’s Hospital in London where Tina’s eggs were treated before being fertilised and implanted.

After a straightforward pregnancy, Poppy was delivered at Southend hospital. Tina said: “We may have taken the chance and started a family without knowing – and we would never judge anyone who chooses to do that – but it’s great to know we don’t have to worry about Poppy becoming ill in the future.”

The whole family are members of the Southend branch of the Huntington’s Disease Association, which offers help and support to sufferers and their families. Tina said: “I don’t go every week, but I go when I can and it’s a great source of support. Dad goes every week and is very close to the people he knows there. He relies on it a lot.”

She is still sure she doesn’t want to know whether she has Huntington’s, and has not shown any symptoms of the disease so far. Tina said: “I’ve always thought what’s the point of knowing. It would be fantastic to know I’ve not got it, but if you do get that positive result and you’ve got it, you just know you will get ill in the future. You can’t take that back and you have to live with it, waiting to get ill. It’s a bit of denial really, but not to the point where I’m in total denial about it – we talk about it a lot and I’m close to my dad, but the not knowing is better than the knowing for us.”

For more information on Huntington’s disease and the Southend support group, visit http://hda-southend.org.uk