Huddersfield couple devastated after daughter’s death from rare disease

THE HEARTBREAK endured by a young Huddersfield couple could have a positive ending.

Rowan Poole
Rowan Poole

THE HEARTBREAK endured by a young Huddersfield couple could have a positive ending.

Sarah and Matt Poole lost their beloved daughter Rowan to a genetic killer last November.

But now they and friends are planning sponsored events – to remember Rowan and to help other children like her.

Their daughter was suffering from Spinal Muscular Atrophy (SMA) – an incurable genetic disease and the UK’s biggest genetic killer of children under two years old.

Now they hope to raise £10,000 to help research into the condition.

The couple married in 2008 and were overjoyed when they were blessed with a beautiful little daughter, Rowan, born on May 26, 2011.

Their world seemed to be complete but unbeknown to them it would fall apart in the most tragic manner imaginable within months.

At around six months old Sarah noticed that Rowan showed no inclination to begin crawling or holding toys or attempting to feed herself.

Initially, she was misdiagnosed as suffering from Hypotonia – a condition that involves muscle weakness.

Sarah, a 28-year-old sign interpreter for the deaf, of Norman Road, Denby Dale, said: “Obviously we were worried but with intense physiotherapy we hoped she would catch up with her peers.

“But I was not happy with the information I received so I decided to have a second opinion.”

Doctors from Huddersfield NHS confirmed the couple’s worst fears in April 2012. They diagnosed SMA, a condition which affects between 5,500 and 6,000 people at any one time in the UK.

For a child to develop SMA, both parents must have the defective gene and pass it on to their child. These parents are known as carriers, and don’t actually have SMA themselves.

Sarah said: “We were absolutely devastated. We had never even heard of SMA prior to Rowan being diagnosed let alone that we were both carriers.

“It turned out that there’s a one-in-40 chance that anyone has the defective gene.”

But the couple were determined to carry on with family life as far as possible.

Sarah said: “We didn’t let anything stop us. We went to Wales, Filey and even took her to see the Paralympics in London.”

But on November 23, 2012, Rowan lost her brave fight for life and died peacefully aged just 18 months.

Sarah said: “She meant the world to me and Matt. We miss her.”

On Saturday the couple travelled to Dovestones Reservoir, Saddleworth, where Rowan had enjoyed many happy times, seeing the ducks and planted a Rowan tree and laid a plaque in a memorial garden.

They also scattered her ashes in the ground to feed the tree.

Rowan Poole

Now one of Sarah’s best friends, Julie Elliott, is planning a sponsored walk in her honour.

It will take place on Sunday, May 26, and will raise money for the SMA Trust which is working with scientists to find a cure.

There is a small glimmer of hope, with several therapies entering or approaching clinical trials in humans.

The walk is starting at The Pie Hall, Denby Dale, and will wind is way through Holmfirth, finishing 17 miles later at Dovestones. Poignantly, it will take place on what would have been Rowan’s second birthday.

The walkers will all be wearing their favourite ‘Onesies’, carrying buckets and collecting from businesses.

Julie, a 28-year-old primary school teacher, from Denby Dale, said: “I spent a lot of time playing with Rowan and trying to keep Sarah’s spirits up.

“The walk was my idea. I wanted to do something to help. I can only run for about three miles and I wanted it to be a proper challenge so this walk seemed the perfect thing.”

If anyone can help with the fundraising or would like to take part in the walk, please contact Julie Elliott on: j_m_elliott20@hotmail.com

Sarah is also planning a fundraising 3.8km outdoor swim in Derwent Water in the Lake District on June 16.

And Matt, an engineer, is set to take part in a coast-to-coast event in the Highlands of Scotland, in September.

Sarah said: “We are aiming to raise £10,000 this year for research into SMA.”

As for further attempts to have children she said they had not decided yet on the best way forward.

She added: “You can have tests on the embryos at eight weeks. The chances of us having a child with SMA are one in four.”

 
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