Mother hails brave daughter as four-year-old is only child in UK battling two rare illnesses at once

Little Anna Penman has had to battle to make it through 2012 after she was diagnosed with leukaemia on top of a debilitating condition called spinal muscular atrophy (SMA). The plucky youngster is thought to be the only tot in the UK to be treated for both conditions at the same time.

The four-year-old has endured rounds of intensive chemotherapy which left her wheelchair-bound and susceptible to killer infections. In a bitter blow, she was diagnosed with cancer just four months after developing SMA, a muscle wasting disease.

Despite the odds, Anna has survived to celebrate Christmas with her “overjoyed” mum, Ann Marie, 45, and older brother Nathan, six.

With consultants predicting she will beat her leukaemia – and a fundraising drive to raise money for a state-of-the-art wheelchair nearing its target – the family said they are now beginning to look to the future with hope.

Ann Marie said: “There have certainly been a couple of times in the past year when we weren’t sure Anna was going to be with us, but now we’re really optimistic.”

The family said Anna’s survival capped a roller coaster year during which the strain of caring for her became “almost unbearable”.

She was diagnosed with SMA in July 2011 after a gruelling year of tests, consultations and hospital visits.

Still getting used to the reality her daughter was suffering from the rare degenerative condition – thought to affect only about four out of every 100,000 people – Ann Marie had no idea that a severe bout of illness in December last year heralded even more anguish.

It was then that tests confirmed Anna had leukaemia and she was admitted immediately to the Capital’s Sick Kids hospital for six weeks of intensive chemotherapy.

Having only just accepted she would probably need to care for Anna for most of her life, confirmation her daughter was also suffering from cancer came as a hammer blow to Ann Marie.

Contemplating the damage that chemotherapy would do to Anna’s already weakened muscles and immune system, her family were forced to face the “devastating” possibility they would never spend another Christmas together.

Ann Marie said: “The leukaemia diagnosis came as a complete shock.

“Anna was clearly ill for about a month but we thought it could have been explained by the SMA. We just didn’t expect it would be due to another rare condition.

“The treatment for leukaemia is very intensive and aggressive – it has to be. But it means she’s open to infection a lot more. Then things are made even harder by the fact that one of the side effects of treatment for leukaemia is muscle weakness.”

She said the family were faced with choosing whether to go ahead with chemotherapy to boost Anna’s chances of survival, or withdraw her from treatment to preserve what little muscle strength she had left.

“One of the hardest things was that we had to decide to give her known, effective treatment for leukaemia because it would have caused a more serious loss of strength in her muscles,” said Ann Marie.

“In the end, the priority was that she survived the leukaemia and devising a treatment for that, along with the SMA, involved consultants throughout the UK.

“It’s very rare for someone to have leukaemia and SMA together. We couldn’t find a case of it in the UK before.”

Although Anna successfully came through the initial round of chemotherapy, her mum admitted caring for her has taken its toll.

“She needs help from the moment she wakes up, when she needs help sitting, and then for every single thing she does during the day,” she said.

“It means we’ve had to spend much of the last 12 months living in the hospital. And it’s had an impact on her brother, who’s had to get used to being apart from Anna and me for long periods of time. It’s affected every part of our lives.”

The impact of daily chemotherapy on Anna’s weakened body has been just as heavy.