Elodie and Belle's story

Jessica and Tim have built a loving home in Kent, where they’re raising their two daughters, Belle, 6, and Elodie, 2. Their journey as parents has been filled with joy, but it’s also brought unexpected challenges – particularly when Elodie was born with a severe vision impairment. Despite the uncertainty and emotional toll, Elodie has thrived thanks to early intervention, a supportive environment, and her family’s unwavering love and strength. 

Unlike her big sister before her, Elodie didn’t seem to be tracking objects or making eye contact during her early months. Concerned, Jessica and Tim sought medical advice, which led to multiple referrals and tests. At four months old, they learned that Elodie was severely vision impaired.

Though the cause was initially unknown, nearly a year later extensive testing confirmed a rare diagnosis: Leber’s Congenital Amaurosis (LCA). This genetic condition affects the retina and causes severe vision loss from birth, often leading to complete blindness.

At first, Jessica and Tim were overwhelmed. “We felt completely lost,” Jessica recalls. “We had no experience with blindness, and no idea what Elodie’s future would hold.” They weren’t just worried about Elodie – they were also concerned for Belle, who was just starting school at the time and adjusting to life with a new baby sister.

During all this, the family faced another devastating blow. “My dad, Belle and Elodie’s grandad, became very unwell,” Jessica shares. “I spent the majority of my maternity leave visiting him in hospital, while my mum pushed Elodie round the hospital corridors, and Tim juggled Belle’s school pickups, Elodie’s walks, work, and being my biggest support.” When he passed away on the same day as Elodie’s diagnosis, the emotional impact was enormous. Belle, then only four, began to show signs of distress, becoming quiet at school and frustrated at home.

But then, they met RSBC Family Practitioner, Claire. “I remember the earliest support we received was from Claire, who had just started at the charity. She made time for a meet and greet with me and my husband,” says Jessica. “The call was filled with such support and warmth, knowing that Claire was there for us and knew how to help us.” Claire explained the support RSBC could provide, including counselling services for the whole family.

Realising Belle needed someone to talk to, Jessica reached out to Claire again, and she immediately arranged school visits and coordinated with the school’s Family Liaison Officer to set up regular sessions. “Claire scheduled full terms of biweekly meetings, which gave Belle time away from class to discuss anything she wanted. She felt safe and special, and we noticed a lot of her frustrations were reducing at home, too.”

Having this emotional wellbeing support made a lasting impact on Belle. It gave her space to express her feelings, learn more about Elodie’s condition, and start seeing her sister’s blindness not as a barrier, but just one part of who she is. “Through being supported by RSBC, Belle has talked to other children more about her understanding of visual impairment and what it means,” explains Jessica. “I can also feel the inclusivity that RSBC provides. When we attend events, Belle gets excited to see if she recognises her friend Claire anywhere.”

The family has also accessed RSBC’s wide range of resources. “I regularly find myself on the website, just having a look at what’s going on and any new stories being featured,” Jessica says.

Meanwhile, Elodie has begun carving out her own path. She attends nursery three days a week, where staff have adapted the environment to support her needs. She plays with friends, learns new skills, and grows in confidence every day. Sensory-friendly tools and thoughtful strategies, like using familiar plates from home, help her build independence. Though initially overwhelmed by busy spaces, she’s grown to enjoy the playground and the social interactions that come with it.

Meeting adults with visual impairments in their local area gave Jessica and Tim hope that Elodie could live her life without limits. And Belle, through RSBC’s sibling support, has grown into her role as a compassionate, confident big sister.

Jessica and Tim are committed to raising awareness in their community. Elodie’s cane has become a talking point in the school playground, helping to normalise the use of mobility aids and spark important conversations. “Every time we’ve wondered if Elodie or Belle wouldn’t be able to handle something, they’ve both proved us wrong,” Jessica says. And Elodie and Belle have formed a deep sisterly bond: “They bicker and play like any siblings do!”

There are still hard days, but the family’s journey is a testament to resilience and the difference that meaningful support can make. With the love of her family and the right guidance, Elodie is shaping a future full of possibilities, and Belle is walking proudly beside her every step of the way.

Looking for support, advice and guidance? Find out more about RSBC’s Families First service. Or head to our What’s on page for the latest activities for you and your family.