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

Ann Marie Penman with daughter Anna. Picture: Toby Williams

Ann Marie Penman with daughter Anna. Picture: Toby Williams

 

A MOTHER who feared her seriously ill daughter might not live to see another Christmas has told of her joy at reaching the milestone, saying: “We’re now optimistic for the future.”

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.

“She’s certainly much weaker now than before the leukaemia,” said Ann Marie. “She’s completely confined to a wheelchair.

“Because no-one has had the condition before, we don’t know whether some of her strength may return but we think she will always be a wheelchair user.

“The uncertainty is over whether she’ll be confined to the wheelchair in future.”

Ann Marie said the pain and anguish had been worth it to help ensure the miraculous survival of her “bright and assertive” little girl - who likes nothing better than to play with Barbie dolls with friends at Linlithgow’s Bonnytoun Nursery.

The Christmas joy has been two-fold for the family after the stunning success of a fundraising appeal – fast approaching the £21,000 target sum needed to purchase a state-of-the-art Snapdragon wheelchair.

Ann Marie said: “We’ve raised £15,500 of the £21,000 we need for this wheelchair, which will really open up the world for Anna and help her live independently. The response has been absolutely amazing and overwhelming.”

Ann Marie paid tribute to her daughter, who she said remained her usual cheerful, spirited self, despite her illness.

She said: “She’s a very, very happy girl. She’s never complained about the fact that she has these difficulties. She understands and accepts, and asks for whatever help she needs. She’s amazing.”

To donate to the appeal for Anna’s snapdragon wheelchair, visit www.facebook.com/Annasfund/info.

EXPERTS PROBE RARE CASE

ANNA Penman is thought to be the only patient in the UK to develop leukaemia and spinal muscular atrophy (SMA) at the same time.

Consultants have told her family that her case is so rare it is being studied by experts.

Cancer researchers said it was the combination of two already rare conditions in one patient that made Anna’s illness so unique.

Professor Chris Bunce, research director at Leukaemia and Lymphoma Research, said: “You are talking about two very rare conditions.

“The likelihood of having both present in one child at any one time is extra rare. Most haematologists would not expect to see such a case in their lifetime.

“They will certainly see kids with leukaemia but it’s the extra complication created by the SMA that makes it so unusual. That makes treatment challenging and Anna will require extra vigilance to limit the number of problems caused by her chemotherapy.”

 

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