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Hoolie for Hannah raises funds for Arbroath baby who may not see her second birthday due to rare condition

Hannah Ashley Miller SMA
Back row: 'Jivin' Jim Addison, Bruce Miller, Shirley Miller, Barbara Collins, Yvonne Cargill. Front: Ashley Miller, Hannah Miller, Brenda Ross, Richard Allan.

A garden party has been held to raise funds for a girl battling a condition that could kill her before her second birthday.

Eight-month-old Hannah Miller, from Abroath, has spinal muscular atrophy (SMA), a degenerative, life-limiting condition.

SMA is a genetically inherited condition that is caused by a faulty gene, and affects the muscles in the body.

About one in 10,000 babies per year in the UK are born with SMA.

Until recently there was no treatment for the condition. However in the past few years there have been advances in medical technology and research, and there are now treatments available for the condition.

First child in Scotland to receive new drug

In February 2021, after work by doctors at Ninewells Hospital in Dundee and the Royal Children’s Hospital Glasgow, Hannah became the first child in Scotland to be given a drug called Zolgensma on an unlicensed basis.

The treatment is a new gene therapy, which gives the patient an active copy of the faulty gene which causes SMA.

Mum Ashley said: “Hannah’s treatment is going well and she is starting to show signs of improvement – stronger muscles leading to increased movement and head control.

“Her breathing and swallowing have also improved, and this is critical to prevent chest infections which can be very dangerous for her.

“The treatment will help to ensure that Hannah survives, but it is no guarantee to how much mobility she will have throughout her life.

‘The same advantages as children her age’

“The likelihood is that Hannah will require physical aids, wheelchairs and supports to allow her to move and give her a good quality of life.

“Furthermore, as she grows and gets older, the physical aids and supports she requires will change which means she will need a range of resources to allow her to have the same advantages as children her age.”

The fundraiser was held on Saturday in The Glebe at St Vigean, Arbroath, organised by local woman, Brenda Ross, with the title Hoolie for Hannah.

In total, £4,000 was raised on the day.

Brenda is a wheelchair user and has a form of muscular dystrophy, but remains a tireless charity campaigner.

Hannah Ashley Miller SMA
Ashley thanks the crowd who attended.

The event was hosted by radio DJ Richard Allan.

Brenda said: “The weather was fantastic and everybody had a good time with the party games, music, and refreshments.

“A substantial amount was raised for Hannah. There were also fabulous raffle prizes.

“The food was supplied by DH Robertson’s sponsored by Han & Co.

“Portaloos were sponsored by Dundee and Angus College, Ian Smith, and Lindsay street properties.

“Lots of family and friends have donated lovely raffle prizes. The music was provided by Jivin Jim and sponsored by Susan Ettershank.

“Tesco provided the ingredients for the sandwiches.”

Hannah Ashley Miller SMA
Back row: ‘Jivin’ Jim Addison, Bruce Miller, Shirley Miller, Barbara Collins, Yvonne Cargill.<br />Front: Ashley Miller, Hannah Miller, Brenda Ross, Richard Allan.

Ashley said: “It’s amazing, I’m completely overwhelmed. Brenda got in touch and I honestly couldn’t believe people’s generosity.”

“Brenda and her team do a lot of fundraising, they really are fantastic.”

Discussing Hannah’s condition, Ashley added: “Because there’s nothing to compare it to with it being new, it’s just a waiting game.

“The drug is designed to improve muscle control, head control and stomach muscles, so she has been eating and swallowing better.

“Each child with SMA is different as we’re finding out after getting in touch with other families.”

Five-month-old baby is first NHS patient treated with drug for genetic condition