A Montrose mum has set up a social media site to raise awareness about the rare undiagnosed condition her five-year-old son suffers from.
Debbie Mcfarlane (34), of Baird Way in Borrowfield, has set up a Facebook page about her son Aidan, who doctors believe may have two forms of dyspraxia.
Miss Mcfarlane, a nurse at Montrose Royal Infirmary, said: “I wanted to raise awareness because I want Aidan to have a normal life. He’s an extremely happy, sociable and bright boy but every single day is a battle for him to communicate his needs and thoughts.”
Aidan’s condition is currently undiagnosed. He has significant difficulties in producing and sequencing speech sounds, which is indicative of a severe developmental verbal dyspraxia. Aidan also has oral motor difficulties, which causes problems when he swallows if precautions are not taken, therefore he is at increased risk of chest infections and choking.
The youngster also has decreased muscle tone, hyper-mobility, issues with balance, as well as control problems with gross motor skills, such a running or jumping, and fine motor skills, which are small actions involving the use of muscles. These are all symptoms of developmental coordination disorder (DCD), also known as developmental dyspraxia.
Aidan and his parents are taking part in the Deciphering Developmental Disorders (DDD) study, which aims to find out if using new genetic technologies can help doctors understand why patients get developmental disorders.
Within 24 hours of Miss Mcfarlane setting up the social media site, it had more than 500 likes.
She said: “With the Facebook page, I also want to reach out to other families who may have children with similar conditions. A woman from Portlethen got in touch with me, her little girl is very similar to Aidan and we met. If I hadn’t created the page we would never have gotten in touch. She too had never met anyone else in a similar situation.”
She added: “He never babbled as a baby and had a small weak cry. When he was two years old he was referred to a speech therapist.”
She explained Aidan, who attends Lochside School, didn’t speak until he was two-and-half-years-old but did make sounds. Currently he can only say around 40 words.
Aidan uses Makaton, a language using signs, symbols and speech created for children with communication problems, to speak to his family and other children at school who also have communication issues.
Aidan needs an Augmentative and Alternative Communication (AAC) electronic aid, which would allow him to use pictures symbols, letters, words and phrases to speak to people.
He is currently undergoing assessments for NHS funding for an AAC. His mum said it would “give Aidan a voice”.
She added if he does not meet the requirements for NHS funding, the family will be holding fund-raisers to raise the costs of the aid, which can cost up to £8,000. Aidan’s sister Megan (16) has offered to do a bungee jump to raise money for him. For more information, search for ‘Aidan’s Voice’ on Facebook.