Stanley's Story
Stanley is just about to turn three. He loves water, swimming, and is full of energy. He has started showing a real interest in toys and loves anything that spins or flashes. He adores the beach and being outside. He is very smiley and has a wonderful sense of humour. He has two older sisters and lives on a farm with his family in the UK.
Stanley was born with complex club feet. He spent the first year of his life going to weekly hospital appointments to have his feet corrected. He now wears different types of splints both day and night. He also had a Lycra suit to support his posture and muscle tone.
Stanley is small for his age and we have experienced feeding difficulties. His speech is delayed, but he has worked very hard with his speech and language therapist and learned approximately 30 new words in the last three months. He can now tell us things like more, bed, bath, cuddle, downstairs, and outside.
His physical development is very delayed. He has very low tone, but can now sit unaided and roll across the floor. He cannot pull up or walk yet, but he has a walker to encourage independent steps.
Stanley also struggles with fine motor skills, such as holding a spoon, picking up small toys, and posting objects. He has wonderful determination and works hard in therapy. We see big improvements, even though progress can take time.
We have a wonderful family who adore Stanley’s cheeky sense of humour. His older sisters are like second mums to him. He is affectionate and loves to be cuddled by them.
For us, Stanley’s diagnosis was a relief. For more than two years, we knew something was not quite right and felt we had to prove that we needed support. Now we can plan our future and advocate for the support he deserves. We hope for greater understanding as research continues, and we have found the virtual community of other parents hugely beneficial.
