Behind the scenes with CHAS at Robin House

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 suffers from 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 roller coaster because Sabeel's condition is gradually deteriorating, so the daily pampering session for the teen proves valuable bonding 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 on Wednesday, 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 to our reporter 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 that 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 Hospitals 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 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 live, turned out in force as well, with 220 people packing into a hall in Eastwood 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 the dedicated band of supporters who volunteer at Robin House.

With a Christmas party in full swing at the children's hospice on Wednesday, Linda took a few minutes out from her kitchen tasks to talk to the Reporter.

She said: "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 at 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 does garden work in the extensive grounds which are attractively designed with paths, benches and for families to spend quality time when weather permits.

Nicola Porciani, voluntary services manager, CHAS said: “We have over 120 volunteers at CHAS Robin House.

"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."

People in Dumbarton and the Vale of Leven are being invited to make a special gift this Christmas to support the work of Children's Hospices Across Scotland (CHAS).

For 20 years, the charity, which runs Robin House in Balloch, has been offering a full family support service for babies, children and young people with life-shortening conditions.

This includes palliative care, family respite and support – through hospices, homecare services and hospital presence.

Sadly, every week, three children die from a life-shortening condition in Scotland, so CHAS is on a mission to reach every family that needs its help and bring some comfort and joy to families using its hospice service over the Christmas period.

The charity needs to raise a whopping £12,750 per day - in addition to government funding - to pay for the specialist medical, nursing and family support teams that provide vital care services.

These are in the children’s hospices at Robin House and Rachel House in Kinross, as well as in homes and hospitals across the whole of Scotland. This means CHAS to raise £5,650 every day for each hospice, with a further £1,450 per day to care for children and families at home and in hospital, providing care when and where they need it.

CHAS says: "Knowing your child will die before you do is unimaginable. But that is the devastating reality facing so many parents across Scotland this Christmas.

"Every day can be a struggle, placing an almost unbearable emotional, practical, financial and physical strain on the children themselves, their parents, carers, families and friends.

"We are determined to be there for every single one of them. But, right now, we’re only able reach one of the three children that die each week. That’s why we’re asking people to make a special gift this Christmas.

"Whatever you give will mean so much to the children and their families. Rest assured that CHAS will put your money to work straightaway – wherever the need is greatest."

Here are just some of the ways your gift could help:

£10 could pay for the materials a bereaved child needs to make a memory box of their sibling – filled with memorable moments of joy that they will treasure forever.

£20 could pay for a family to have much-needed quality time together over a Christmas meal, cooked at CHAS. Something many of us take for granted, but which is almost impossible when you have a seriously ill child who needs around-the-clock care.

£40 Could pay for CHAS to organise a fun family trip to a Christmas panto. Again, something that might otherwise be too difficult to manage alone and impossible without support.

To find out more about the Christmas Appeal, and make a donation, visit https://www.chas.org.uk/get-involved/support-us/christmas-appeal-2017