Simon’s Heroes children’s charity has funded a package of support for three-year-old Indiana Croft, who has additional needs; a result of him having a chromosome Xq duplication, an abnormality that affects many different parts of his body.
People with this condition have an extra copy of genetic material. The severity of the condition and the associated signs and symptoms vary, based on the size and location of the duplication, the genes involved and the sex of the affected person. In general, males are typically more severely affected than females and often experience intellectual disability, developmental delay, short stature and distinctive craniofacial features.
Indiana, who lives in Kingsbury, struggles to speak and walk and also has sensory processing disorder. He finds it difficult to swallow and has been fed on and off via a nasogastric tube and is on a waiting list for a gastrostomy. He is very sensitive to noise and his surrounding environment, preferring the peace and familiarity of the family home.
After meeting with his family, the charity learned that there were a number of therapies and assessments available through the NHS which would really benefit Indiana, but they involved lengthy processes and waiting lists, with no guarantee they would be provided.
Simon’s Heroes was keen to provide immediate support for Indiana and agreed to fund a sensory assessment, as recommended by Indiana’s paediatrician, to give the family a more in-depth understanding of his behaviours, which included a treatment plan and advice to help improve his daily living. The charity also financed a course of feeding therapy at The Feeding Trust which specialises in complex feeding difficulties. The 12-month programme focuses on developing Indiana’s oro-motor and sensory skills, alongside supporting his growth. Additionally, Simon’s Heroes gifted Indiana a set of climbing blocks, to help strengthen his muscles and manage his hypermobility.
‘We’ve had several sessions at The Feeding Trust now and Indi has made some great progress,’ his mum Emma said. ‘He was refusing all foods apart from custard and chocolate pudding before, but he will now eat a range of different flavoured purees, both savoury and sweet. We are working on a trying a bit of a paste texture next. He is also working on his biting by playing a game with peppers, as recommended by The Feeding Trust, where I sing round and round the garden, and instead of ‘tickly under there’, I sing ‘bite it down in there’, and get him to try to bite down with his molars as he has trouble coordinating biting and moving his tongue around to chew food.
‘He is also now licking his lips and putting his fingers into his food, then into his mouth, which doesn’t sound like anything big, but they’re huge milestones for him, as he has sensory issues. We are also trying to train him to use a straw to get him off the baby bottle. No success so far, but we keep trying.
‘We had the sensory assessment, the report was very useful as it was used in his educational, health and care plan, to outline his needs going forward in nursery and school.
‘The soft play equipment is a huge hit and it has really helped his confidence in climbing and sliding. He has hypermobility, so it’s important that we strengthen his muscles, and doing so through play is obviously more enjoyable for him than exercises. It’s great that he can do this in the safety of our own home.
‘We can’t thank Simon’s Heroes enough for all of the help it has given us.’
Author: C Abbott.
