Alex and his twin sister were born prematurely at 31 weeks of gestation (weighing 819g) due to concerns about Alex’s placenta only intermittently working. His twin sister thrived, but he required additional intervention by various medical professionals.

His reflux resulted in him being constantly sick, making him unable to gain weight. Until January 2020 (aged 18 months), Alex predominantly slept as he hardly moved unless encouraged through physio exercises. Going outside caused him much distress and often resulted in constant colds. He could sit with the support of a cushion. He attended ‘Star Group’ for one term and thrived, learning to transition between sitting and rolling, and positioning himself to crawl almost instantaneously. He also started to hold a bottle independently while lying and interacting with objects around him. He still needed numerous naps throughout the day and easily wore himself out.

In March 2020, he had to shield due to the pandemic and his groups were cancelled. By the end of lockdown in April 2021, he could travel greater distances without getting tired and increased his speed. He started to enjoy going out into the garden, and showed a preference for favourite toys, which often comprised of flashing lights and sound. He struggled to communicate his needs and often got frustrated.

Currently 2025, Alex really enjoys attending school and is much more content during term time. He can pull up to stand independently onto his feet using various objects for support, can ocassionally manage 5 - 10 steps with splints. His reflux has improved but can still leave deposits of sick around the house; at times he can still get very distressed and gets trapped wind on numerous occasions. He still struggles to use a cup but can manage a bottle independently. He shows emotion in his sounds such as excitement and frustration. Alex often does a lot of head banging and this causes some injuries. He often hits his head backwards if he is sitting on a highchair. He keeps on banging his head against hard surfaces quite regularly.

Intervention is needed from an adult to stop Alex from harming himself and to help him interact with toys/surrounding environment appropriately and safely.

His interests have developed into cause and effect toys for example ball in bucket or down a slide though he frequently seeks sensory items for regulation.

He is still monitored and under the care of many specialists, non verbal with mental age between 9 - 18 month baby.

Alex’s diagnosis:
● Chronic lung disease of prematurity – no longer on oxygen
● Severe gastro-oesophageal reflux disease
● CGH Array showing chromosome 16p 13.3 micro deletion
● global developmental delay – non verbal/ incontinent
● hypoplasia of corpus callsum
● Autism spectrum disorder(ASD)
● Epilepsy
● Tracheobronchomalacia
● Subglottic stenosis – Grade 1
● Under active thyroid – medication

My hope is Alex will grow up to be an independent/ confident person and that his additional needs will not prevent him from achieving any aspirations/ interests he may have.