Below is our Easter appeal, featuring Daley. We hope you will enjoy reading his story and be inspired to give to help other blind children. You can donate now here:
“When I first realised Daley wasn’t able to make eye contact with me my heart began to race. Was there something wrong with his sight? Why wasn’t he able to focus his eyes?”
Last year, mum Donella had been breastfeeding five week old Daley when she noticed something might not be right with her precious baby boy.
Donella quickly sought advice from her GP to find out what could be the cause of his roving eye movements.
She was initially relieved to find out that Daley’s retinas appeared to be healthy and normal. Her GP referred Daley for further tests just in case.
“At first I completely blocked out the idea that there could be anything seriously wrong with his sight, even though the warning signs were there.”
Donella’s relief was short-lived, as she began to grow increasingly more anxious when Daley still wasn’t appearing to focus on her face, any objects or even bright lights. It was during their second visit to hospital that her fears proved true. They met with a consultant who recognised that Daley’s eye condition could be a lot more serious than anyone had first thought.
“I remember how I just focused all my attention on Daley during that appointment, bouncing him on my knee and singing to him.”
“I just couldn’t register what was being said to me by the doctor. I didn’t want it to be true.”
During this same visit the family were introduced to our Family Support Service for the first time. Michelle, one of our Family Engagement Workers, was at the hospital that day and accompanied Donella and her family to the consultation.
We know that at medical consultations like these parents can feel overwhelmed and dazed, and unable to take in all the clinical information and terminology they hear. This is exactly how it was for Donella, so having an expert from RSBC in the room would prove invaluable.
Although they knew Daley’s condition was serious, they were yet to find out the exact nature of it or what it meant for Daley’s future. Donella found herself at the start of a three month long, agonising wait for a diagnosis for her son.
“We were in a state of limbo during this period. Something was clearly seriously wrong with Daley’s sight, but I had somehow convinced myself that the worst that could happen was that Daley just had nystagmus and would need to wear a strong pair of glasses when he grew a bit older.”
“When the test results finally came back I was devastated. I had no idea what it would mean for Daley’s future.”
Daley was diagnosed with Lebers Congenital Amaurosis (LCA), a condition that causes severe vision impairment at birth which often results in further deterioration through childhood.
Like in Daley’s case, the condition often goes undetected at first as the retinas appear to be normal and healthy. It’s only when electroretinography (ERG) tests are carried out, that specialists can see that there is little or no activity in the retina and LCA can be properly diagnosed.
As Daley is still so little it’s hard to assess exactly how he sees the world. Unfortunately, as he doesn’t respond to light when it’s turned on in the room doctors think that Daley’s visual function is already significantly reduced.
Family Engagement Worker Michelle told us, “I observed the consultant turn off all the lights in the room and shine a bright light in front and off to each side of Daley’s line of sight and he did not respond.”
Through every step of the diagnosis, Michelle was on hand to give Donella emotional and practical support, and assist with the process of certifying Daley as severely sight impaired.
“I don’t know what would have happened if we hadn’t met Michelle. I don’t know how we’d have coped.”
“It was such a shock for us all to learn just how serious Daley’s condition was. I feel so lucky that Michelle was there to support me and my family”.
Despite her uncertainty about the future, Donella is determined to do all the things other parents do with their children.
“We’re all looking forward to some fun activities over the Easter holidays, and we’re planning to visit London Zoo for the first time!”
We can’t reach families like Daley’s without you
We don’t receive any funding for Family Engagement Workers like Michelle, which means her work simply wouldn’t be possible without supporters like you.
Unfortunately, not every family in Daley’s position can get this precious help – meaning so many are left feeling scared and unsure of who to turn to for support.
It costs approximately £38,932 per year to fund a role like Michelle’s and provide families with truly irreplaceable personalised support.
Would you be able to help us fund more Family Engagement Workers like Michelle so we can reach even more families?
If you are able to donate, no matter what size, more families like Daley’s can begin to see a brighter future.
You can donate online or if you’d prefer to donate over the phone, just call 0203 198 0225.