'It's very hard not to cry when your child tells you that she can't see you'
Diagnosed with a brain tumour aged nine, Sara Gulbe was left with memory and sight loss but thanks to support from a local charity is now enjoying college, writes Helen Carson
Anita Gulbe couldn't be more proud of her daughter Sara. The second in a family of six children, the 19-year-old, who lives in Dungannon, is studying travel and tourism at college and is also a budding artist.
But 10 years ago it was a very different story. After the nine-year-old started suffering crippling headaches, Anita and her husband Atvars brought her to the family doctor.
At first, the family, who are from Latvia and were living there at the time, were told Sara had migraines - but it soon became clear that her condition was much more serious.
"The medicines she was given for the migraines didn't help. The headaches became severe. We phoned the emergency services one night and they brought Sara to hospital," says Anita.
After an MRI scan was carried out, the family received devastating news.
"The doctor told us that Sara had a tumour in the middle of her brain. It was growing bigger. My husband and I felt numb and empty."
Doctors told the couple that because of the position of the tumour, they could not give any promises that she would survive surgery. They were told it was their choice whether to go ahead with it at that time. Hoping for a miracle, the couple, who have a strong Christian faith, decided to delay the operation.
"We went to church and prayed. She was okay for a year - no headaches at all," Anita says.
But just before her 10th birthday, Sara's symptoms returned. The family brought her back to hospital where another MRI scan was carried out. Doctors told them they had to operate immediately.
The surgery was carried out within days and was a success, but Sara then faced months of gruelling radiotherapy and chemotherapy to rid her body of the tumour.
She lost her hair and was left with permanent issues including eyesight problems.
Anita says: "She can see straight on but her peripheral vision is affected. It is very hard not to cry when your child tells you, 'mummy, I can't see you'."
Sara was also left with hearing loss and other effects of acquired brain injury including memory problems. She had to learn everything again, including writing.
"She was a very good student at school - first in her class in maths. She lost all of that because she needed a long time to recover," says Anita. "At first she didn't understand why she couldn't remember things. She went back to school but it was hard for her because she was different and was targeted by bullies."
Her mother says this was an incredibly difficult thing for her already suffering daughter to deal with: "Emotionally she's affected - she sometimes cries very easily."
The family - including siblings Kasper, (25), Esther (18), Dans (17), Marta (15) - rallied around Sara. The family grew with baby Laura, now eight, born not long after her illness. Anita admits it has been hard for them.
"It affected the family very much. My eldest child Kasper was a teenager at the time and he understood how serious it was. But my other children were too young to really understand. They tried to be happy but they felt lost. They didn't know how to react to Sara," she says.
Since the family moved to Northern Ireland five years ago, Sara has received support through Brain Injury Matters. The group have just been awarded £700,000 from the Big Lottery Fund's Supporting Families programme for the Family First project, which will offer tailored support to families with children affected by acquired brain injury across Northern Ireland.
Anita says Brain Injury Matters' support has made all the difference to Sara - and she only wishes she could have had it when she first became ill.
"She meets other people like her who have been affected by brain injury. That has made her more confident because she is not the only one who is different," she points out.
"They teach Sara how to live with things like memory loss - techniques like making notes. She is more independent now and is able to travel on the bus on her own now, which before would have been impossible. It's made a really big difference to her and to the whole family - we are at peace that she will be okay."
Anita says the new Family First project will be vital to families going through what they went through a decade ago.
"This Brain Injury Matters project is great because it will help families with younger children.
"There was nothing like that for us when Sara became ill in Latvia. It will help keep families strong," she says. People like Sara and their families will benefit in a share of funding worth almost £3.4m from the Big Lottery Fund's Supporting Families programme.
Brain Injury Matters received £700,000 to work with Belfast Health & Social Care Trust on the five-year Family First project. It will offer intensive support to children under 12 with acquired brain injury and their families across Northern Ireland. It is one of five projects recently awarded funding totalling £3,387,105 million.
Fiona McCabe, chief executive of Brain Injury Matters, says: "Acquired brain injury can be caused by a variety of things - a fall, a car accident, through a stroke or through an infection or an illness like meningitis. The effects can be very different depending on the person.
"They can have problems with organising and problem solving and everyday tasks. There can also be emotional issues such as mood swings, apathy and irritability. Because inhibitions can be lowered, they may encounter social problems. This is particularly difficult for a child and their family, especially if issues only become apparent some time after the injury and outwardly children appear fine.
"Families in these situations need the right support as without it they can fall apart. Parents may feel guilt and blame themselves for their child's brain injury. Because there is understandably focus on the child with the acquired brain injury, their brother and sisters may feel confused and excluded. All this puts pressure on the family unit and can make the child's rehabilitation all the more difficult."
Ms McCabe says the Family First project will include one-on-one and group support and training, and activities to promote independence, interpersonal skills and development.
There will also be an online support forum with the aim of creating stronger families.
"Our rehabilitation team will work with families in their homes and in community venues to ensure the child's needs are met and the family remains strong," she adds.
The long road to recovery...
- Brain Injury Matters is a charity dedicated to supporting people with Acquired Brain Injury to rebuild their lives and reach their full potential in the community
- An Acquired Brain Injury (ABI) is an injury caused to the brain by events after birth rather than as part of a genetic or congenital disorder. ABI can happen to anyone at any time and can have life-changing consequences for the individual, their family and friends
- ABI may occur as a result of trauma, for example, a fall, sporting accident, road traffic collision or assault, stroke, hypoxia (lack of oxygen to the brain), infection such as Encephalitis, substance abuse, or a tumour
- A person who has an Acquired Brain Injury can look healthy and fully recovered. However, the difficulties they face are caused by permanent damage to the person’s brain function. These impairments to cognitive abilities or physical functioning for many people may gradually improve. However, at the time of their injury it is impossible to predict how much they will recover, or how long it may take.
ABI is different from mental illness:
- Mental illnesses are diagnosed illnesses usually with known treatments. ABI is not. ABI is sometimes mistaken for a mental illness
- The key point of difference is that the symptoms of mental illness are usually treatable with drugs, whereas ABI is not