Born eight weeks early via emergency c-section, Finlay suffered breathing difficulties at birth, spending the first five weeks in the neonatal intensive care, with his first week on a ventilator. Finlay was diagnosed with a rare genetic disorder, Hao Fountain Syndrome, which affects chromosome 13. This rare condition is diagnosed in only 250 people worldwide, and is characterised by hypotonia (muscle weakness), developmental delay, including speech, and seizures.
When Finlay first attended our centre, he was only 10 months old and initially accessed physiotherapy and conductive education. At this time, he could respond to his name, track people or noises and make choices with food. He has always been a very social child, trying to join in conversations with a range of sounds and giggles. Finlay suffers with speech delay, meaning that it is difficult for him to express himself, and he struggles with formulating words verbally.
Finlay attends sessions with our highly specialist Speech and Language therapist. Using Makaton sign language and his personalised Pragmatic Organisation Dynamic Display (PODD) book – provided by the charity – Finlay is now able to better engage in activities, anticipate things happening, and has begun to vocalise sounds or words. He laughs loudly when excited and can say ‘mamma’ and ‘dah’ when speaking to his parents. Using his signing knowledge, Finlay can now communicate his needs with almost 50 Makaton signs being used spontaneously – and he is keen to learn more!
Since coming to the centre, Finlay has become noticeably more confident, communicating more with staff and other children through gestures, vocalisations, and signs. He is now far better equipped to communicate his thoughts, feelings and needs with those around him.
“We’re so proud of the progress that Finlay has made since coming to Dame Vera Lynn Children’s Charity. It is life-changing for him to be able to communicate his needs with the family and it is amazing to hear him start to say our names.” – Finlay’s mum, Faye