When Aimee and Richard’s son Eoin was born with glaucoma, they were unaware of what support was available for both him as a new-born with an eye condition, and for them as parents of a child with a visual impairment. Eoin's father Richard tells his story:
"At just three months old, Eoin was diagnosed with Primary Bilateral Congenital Glaucoma. We noticed some cloudiness in one of his pupils, although this quickly disappeared; we could so easily have missed it and his could have been a very different story. Within weeks, Eoin had undergone surgery at Moorfields Eye Hospital. Over the following weeks and months, he received a number of further surgeries including trabeculotomies, goniotomies and a trabeculectomy. During Eoin's first year, we administered thousands of eye drops, took him for several examinations under anaesthetic, did whatever we could as parents to allow numerous brilliant medical professionals to do all they could to save our boy’s eyes. Fortunately, the treatments he received stabilised his condition and now, nearly 5 years later, he continues to show good results at his regular check-ups.
"But of course, Eoin still has glaucoma. We are still constantly aware of the risk to his sight. Thankfully we have not had to make this journey alone. Wiltshire Council’s Sensory Impairment Service put us in touch with Wiltshire Sight, who have been there to support us from very early on. They have been able to provide the advice and reassurance that we have often needed. Their regular ‘Zoom Club’ activities have given us the opportunity to meet the families of other children with visual impairments and to enjoy a number of days out to attractions like Legoland and Longleat. The Legoland visit in particular came at a time when, due to the cost of taking Eoin to London for frequent surgeries, we would never have been able to afford to take the kids to a theme park. Wiltshire Sight’s staff made us feel important and made sure we thoroughly enjoyed our day.
"Aside from the wonderful days out they have arranged for us and other families, Wiltshire Sight holds regular craft sessions which are a great opportunity to meet other parents and to see some of the resources that are available to families with a visually impaired child. Eoin always looks forward to visiting the centre in Devizes and has delighted and amazed us by becoming involved in sensory play, even putting his feet in paint which before Zoom Club he never would have done. The encouragement he received and the sensory equipment they have invested in has helped him to achieve many milestones. "Whether they are giving advice on equipment to use at home, putting us in touch with other support services, highlighting some of the grant funding available, or simply reminding us that we are not alone, Wiltshire Sight continue to be a valued part of our lives. We would not hesitate to advise anyone else living with a visual impairment to contact them. If they cannot help with something, the chances are they will know who can. No matter what you need, they will never turn you away."
If, like Richard and Aimee, you are a parent of a visually-impaired child or young person and looking for help, support or advice then please do get in touch with Sarah O’Rourke our Family Support Officer. You can contact Sarah by email [email protected] or by calling our Devizes office on 01380 723 682.