Children’s Charity Cries out for Cash

News release

25th July 2013

A Lincolnshire charity run by a Sleaford couple has more than doubled the amount of families it helps in the last six months - but now it needs to boost its funds.

The Ally Cadence Trust supports babies and their families after the diagnosis of Spinal Muscular Atrophy (SMA) Type 1. The genetic disorder mostly affects babies and toddlers and is usually fatal, with a life expectancy of up to two years.

The charity was founded in 2009 by Emma and Karl Humphries after they lost their baby daughter Ally Cadence to SMA Type 1, at just six months old.

In 2013 the Ally Cadence Trust has gone from strength to strength, as Emma and Karl have travelled across the UK to provide affected families with support, guidance and vital equipment.

So far this year the charity has helped eight families, twice last year’s total, and more are on the waiting list. Because of the high demand, however, its funding is now running low and the couple are worried about finding more money at such a busy time.

“We have been to visit families across the UK this week – we are very busy and it’s fantastic to be able to help so many families. However, our funding is now depleting and we desperately need to secure more money to be able to help more people,” said Emma.

“We took a phone call late last night which means that today we will be driving 600 miles to pick up and deliver equipment to a family who need it. We don’t want anybody to go without support if we can help it.”

The charity is now depending on donations from the public and the success of their annual Butterfly Ball on 28th September, for which tickets are still available.

“We were hoping to raise £30,000 this year and are relying solely on the generosity of others to help us secure it,” said Emma. “We are truly grateful for every single penny that is donated to the Ally Cadence Trust, as are the families that the money enables us to support.”

If you or your company would like to donate to the Ally Cadence Trust, please visit www.actsma.co.uk, call Emma on 0800 23 43 762 or email emma@actsma.co.uk.

To find out more about the Butterfly Ball, visit www.butterflyball.co.uk.

Case Study

Louie Bull from Mordon in Surrey was diagnosed with a rare form of the SMA disorder, known as Spinal Muscular Atrophy with Respiratory Distress, or SMARD, when he was just 10 months old. Only five children in the UK, including Louie, are known to have SMARD.

After three months in paediatric intensive care, Louie was given a tracheotomy. Three months after his operation he has now returned home, where he is monitored 24/7 by his mum Natalie and at night by a trained nurse.

Just half an hour after learning of Louie’s diagnosis, Natalie called the Ally Cadence Trust for support. Emma and Karl travelled to St George’s Hospital in Tooting, London, to visit the family and provided a number of items of equipment, including sensory toys.

“The charity set up a web page for Louie that has helped us to raise lots of money for him, and where people can send cheques to when they do fundraisers,” said Natalie.

“This has been a great help and takes away those financial pressures that we just don't need, as I am now Louie's full time carer.”

So far Louie’s fundraising page, set up by the Ally Cadence Trust, has raised £16,119.97. This money helps to pay for extra equipment and care that Louie will need throughout his life.

The dedicated fundraising pages are part of the package of support that the charity provides to all families.

“Louie is doing very well at home,” said Natalie. “He cannot walk or sit up, but he can move his body. He can talk a bit too, saying things like ‘dada’, and he is always smiling. However, he will be on ventilation for the rest of his life and so we are just taking it day by day.”

Ends

Notes to editors:

About the Ally Cadence Trust for Spinal Muscular Atrophy

• The trust was set up in March 2009 by Karl and Emma Humphries in memory of their daughter Ally Cadence. It became a registered charity in December 2009
• Since launching it has raised more than £50,000 to help people affected by the disease get access to specialist equipment
• Visit www.actsma.co.uk for more information about the charity and, to read Ally’s story,  visit www.allycadence.co.uk
• Spinal Muscular Atrophy is a genetic disorder that affects nerve cells so that muscles can't be used and become wasted, or atrophied. The nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can't be used and waste away. This can lead to problems with breathing as well motor activities such as crawling, walking, feeding and head control.

Cesca Bickley
Shooting Star PR
01522 528540
cesca@shootingstar-pr.co.uk
www.shootingstar-pr.co.uk
t: @cescabick

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