Like many teenage girls, Sabeel Hussain likes nothing better than having her hair, nails and make-up done to perfection.

The 15-year-old loves a bit of pampering and wants to look her best during the Christmas party season.

And when she arrives with her mum Saiqa at Robin House Children’s Hospice in Balloch, staff and volunteers welcome her by telling her how fantastic she looks.

Sabeel has a very rare genetic disorder, called Pompe disease, which prevents her body breaking down glycogen, causing the skeletal and heart muscles to become progressively weaker.

She uses a wheelchair, is non-verbal, and is ventilated constantly, meaning she requires full-time care. She has been using Robin House for the past 10 years.

Single parent Saiqa is on an emotional rollercoaster because Sabeel’s condition is gradually deteriorating, so the daily pampering session for the teen proves valuable bonding time between mum and daughter.

Saiqa told the Reporter: “She enjoys the experience and looks forward to it every day.

“When we meet people, sometimes they feel a bit awkward, but when they notice her hair and her make-up they comment on it and it becomes a conversation starter.”

When the Reporter visited Robin House, a Christmas party was in full swing in the brightly-decorated lounge, with carols being sung and Olaf the Snowman, from Frozen, making a special-guest appearance.

With one watchful eye on Sabeel, who was in the midst of the fun, Saiqa spoke openly about how there was a very strong chance this would be the last Christmas her daughter would experience.

She said: “We see her deteriorating. She is, essentially, trapped in her own body and we see her experiencing more ‘absences’ when her brain shuts off and she has no power to control it.

“Mentally, she’s fine but, unless you know her, it’s difficult to know what’s she’s thinking because she now has minimal facial expression.

“She can be stubborn and will look away if something doesn’t please her.

“Yet, two and a half years ago she could have a proper conversation with you.”

Saiqa knows only too well the cruel and devastating affect Pompe disease can bring.

Twenty-four years ago she lost her eldest son Raze to the disease when he was barely one year old, and when Sabeel was diagnosed at around the age of eight weeks it was a double blow.

She said: “I have lost a child so I know what it’s like. It’s the most painful thing anyone can experience.”

Now, with the support of doctors at the Queen Elizabeth University Hospital and Yorkhill Hospital in Glasgow, Saiqa takes every day as it comes and already has had the difficult discussion about stopping Sabeel’s medication.

She said: “I have had discussions about stopping her enzyme replacement therapy which would give her three months of life.

“Doctors would make that decision but I would say ‘no’.

“I would argue with them – but when we are at that stage I would know how to deal with it.

“She is now believed to be the third oldest person in the world with the disease. In theory, it’s how we expected it to be, but it’s an unknown situation.

“Now it’s just a case of keeping her happy and focused.

“The staff and volunteers at Robin House have been been fantastic and I can’t praise them enough for everything that they do.”

Sabeel has also been supported by Scots showbiz stars Matthew Gibb, described as Glasgow’s only grown-up teenage busker, and Nicholas McDonald, who was the runner-up in the 10th series of The X Factor in 2013.

Both entertainers attended recent birthday celebrations for Sabeel, and the local community in Darnley, where the family lives, turned out in force as well, with 220 people packing into a hall in Eastwood Theatre to show their support.

Saiqa said: “Now it’s a case of cramming in as much as we can. We are going to concerts and the panto in the Pavilion.”

And with Sabeel’s older brother Faraz recently becoming engaged, there is a prospect of a wedding in the air, although no date has been set yet.

Saiqa said: “I have been talking about the wedding to Sabeel regularly, keeping her mind focused and she knows it will be a special occasion.

“Faraz’s fiancee, Sehar, lives near Islamabad in Pakistan, so there will be a small ceremony there. I will be here at home with Sabeel but the plan is for there to be a traditional Asian wedding back here in Scotland.

“We would love to dress her in a bright Asian outfit and have her hair and nails done the way she likes them and even apply some henna as is the tradition.

“But we will just have to see how things go.”

Linda Henry, from Dumbarton, is one of more than 120 supporters who volunteer at Robin House.

With the Christmas party well under way at the children’s hospice, Linda took time to tell the Reporter: “Christmas is a special time at Robin House and everyone makes a great effort to create a cheery mood for the children and their families.

“I have been volunteering here for two and a half years and found it very rewarding. It’s a lovely, relaxing place to work.”

Linda’s daughter, Nicole, 18, has autism and attends Quarriers,near Bridge of Weir, which offers valuable care and support.

Linda said: “From a carer’s point of view, I know the importance of respite and by volunteering here I am helping families who also welcome the opportunity to have some respite.”

Linda’s enthusiasm for volunteering at Robin House has rubbed off on son Aidan, 16, who works in the garden where families spend quality time.

Nicola Porciani, voluntary services manager, CHAS said: “They work in all areas of the hospice – from gardeners who tend to our six acres of beautiful grounds to kitchen volunteers such as Linda who provides tasty home cooked meals – something that many of our families don’t have time for, especially at Christmas.

“We also have housekeepers, receptionists, complementary therapists and minibus drivers, who help bring our families to the hospice or take them to hospital appointments – which can be difficult for our families as wheelchairs and bulky equipment are often too big for standard cars.

“Our volunteers are invaluable and without them, we simply wouldn’t be able to provide all the services we offer to support babies, children and young people with life-shortening conditions, and their families, across Scotland.”