Luke is a twin. They were born 9 weeks early due to twin 1 having fluid on his chest. They were in NICU for 4 weeks then home for 11 days when we had to ring 111 for Logan as his head wouldn’t stay still. The ambulance came and rushed him in but it was too late. They then asked to see Luke as they were identical and Luke was very sick. He spent 2 weeks in ICU and 3 on a children's ward.
Since then he has been in hospital a few more times and at 9 months old he was doing nothing that a baby should be doing so he was referred for physio. At 2 years old when he wasn’t walking and still way behind he was referred for genetic testing which showed nothing so was put onto the geonome project. We only found out in 2021 that he has SET D5 from me.
He’s nearly 8 now and has had a paediatrician, health visitor weekly, physiotherapy, speech therapy, support worker, audiology appointments, eye appointments and now wears glasses for his eye condition. He also has a educational psychologist and now waiting for a call from drs about getting his hearing checked again and tested for autism.