Why helping Victoria is just child's play
When Esther Small noticed her beautiful baby girl wasn't focusing on her toys she feared the worst. Now, as her daughter comes to terms with a rare condition that has left her visually impaired, the east Belfast mum tells Helen Carson why funding for support groups is vital.
When east Belfast couple Esther and Andrew Small welcomed their youngest child into the world two years ago, they knew their family was complete. Their beautiful baby daughter Victoria was a little sister for their son James (7) and other daughter Amelia (5).
However, when Victoria was 11 weeks old, her parents feared that there might be a problem with their child's eyesight.
Esther explains: "My husband and I noticed that she was not tracking or following toys that we put in front of her, so we decided to get this checked out. As the days went on I thought there was potentially a problem and became concerned. We were given an appointment on New Year's Eve at RVH Ophthalmology and it was then that we were told our four-month-old baby's sight was badly affected by a syndrome.
She recalls: "We thought it might be a condition called delayed visual maturation, where a newborn's sight takes a bit longer to develop fully. But we never anticipated the news that we got at the hospital on New Year's Eve 2013 - it was horrendous. I will never forget being given the devastating news that our child was severely sight impaired."
But there was worse to come for the young family, as Esther recalls: "We got more bad news in February 2014, when an MRI scan confirmed that Victoria's visual impairment was associated with Joubert syndrome."
The diagnosis revealed that their youngest child, now two, has a rare neurological condition - Joubert syndrome - which affects an area of the brain which controls balance and co-ordination. It can also cause retinal problems and, as a result, Victoria is severely sight impaired.
Joubert syndrome is so unusual there are no official figures recording its incidence, which is why research into this condition is crucial.
However, medical science has indicated it could be a genetic condition passed on by parents, and acknowledges the benefits of learning support and therapies for schoolchildren who suffer from it.
Since her diagnosis, though, Victoria has managed to thrive despite the weakness with her sight.
Esther adds: "Victoria uses the sight that she has well and is making good progress - she started crawling just before her second birthday. But the combination of her visual impairment and her low muscle tone, which is another symptom of her condition, mean that her development is much slower than other children her age."
For this reason the Small family desperately needed support to help their youngest have a good quality of life and not miss out on vital early years development.
Esther and Andrew turned to local support groups in a bid to ensure young Victoria got the best possible start. They also got advice from charity Angel Eyes NI shortly after she was diagnosed.
As a result of this contact they heard about Blind Children UK. The group was able to facilitate regular play-based habilitation sessions which Victoria has been receiving since she was six months old - and which have opened up a new world for the little girl, according to her mum.
Esther says the incredible support has proven to be a lifeline.
"Victoria loves these play sessions and the habilitation specialist has given me so many tips and advice on how to maximise Victoria's vision and movement," she adds.
"Blind Children UK has also provided us with sensory equipment for Victoria, including a fantastic illuminated bubble tube that changes colour.
"This really helps build Victoria's core strength as she sits on her knees to play at it and pulls herself up to reach for the little fish that are inside the tube."
The east Belfast youngster also goes to Sense Nursery two mornings a week and her mum says she really enjoys her time with the staff and making new friends.
She adds: "It's fantastic that this new project will help more families in a similar situation to us. I know that these charities have been an invaluable source of advice and support to us over the last 18 months and Victoria has also benefited greatly from this early intervention, which is so crucial for visually impaired children."
Family life is also better for the youngster, who enjoys playtime with her siblings, says mum.
"James, Amelia and Victoria all play together happily, wrestling with each other and playing rough and tumble. They are aware that Victoria has visual problems -but they don't treat her any differently, they just get on with it. Amelia loves reading to her.
"Victoria is such a social and happy baby - she loves their company. At holiday times when James and Amelia are off school Victoria really thrives - they really bring her on and we can see the difference in her mobility and social interaction."
Being a mum of a visually impaired child, Esther has welcomed today's announcement that one of the charities, which has helped her family so much, Guide Dogs NI will receive a £700,000 grant from the Big Lottery Fund.
Esther is so grateful for all the support she and her family have received from the local groups.
"We first heard about Angel Eyes when we were given one of their leaflets at the hospital, when Victoria was first diagnosed. They were a fantastic source of support and advice for us. Sara, one of the founding members of the charity, came to our home, met Victoria and talked us through all of the support and therapies that we should access for her," she says.
"It was actually on Angel Eyes' recommendation that we got in contact with Blind Children UK (NI) and as a result Pete Locke, one of their habilitation specialists, has been visiting us at home regularly since Victoria was six months old, carrying out play- based habilitation sessions to encourage movement and to develop her understanding of the world around her.
"Victoria loves these sessions and Pete has given me so many tips and advice on how to maximise Victoria's vision and movement.
"The habilitation specialist also links up with Victoria's occupational therapist, speech therapist and physiotherapist to recommend ways of tweaking her therapies to take her sight loss into account."
The charity will use the Big Lottery money for the five-year Northern Ireland-wide Family Focus project.
It is working with families with children aged up to four with a visual impairment who may also have other health needs.
Guide Dogs NI is also working with its sister organisation Blind Children UK (NI), parent-led group Angel Eyes NI, and Sense to offer intensive and tailored support and activities to increase children's development, encourage strong family bonds, reduce isolation and help children to reach their full potential. This project is offering therapies including habilitation, which is specialist mobility and independent living skills training for children who have a visual impairment.
Ian Baxter Crawford from Guide Dogs and Blind Children UK (NI) says: "From our research, we know that the period between nought and four is a key developmental phase for a child - and around 80% of our learning is through vision.
"We need another way of supporting children with sight loss to learn and we do this through the habilitation method.
"A lot of this is done through play and fun activities that are helping children learn things like motor skills, mobility, and how to understand and interact with the world around them."
Mr Baxter Crawford explains that the project is helping visually impaired children reach their potential as they go on to school and ultimately employment.
He adds: "We have the opportunity here to change the lives of a generation of children with a visual impairment.
"It's about looking for the greatest level of independence that people can reach so they are able to live fulfilled lives."
Joanne McDowell, Big Lottery Fund NI Director, says: "We are delighted to be funding new projects through our Supporting Families programme.
"These projects are strengthening families' ability to cope with the challenges they face.
"We hope they will have a really positive impact on the lives of people who need our help the most."