The Spink Family

Imagine being unable to sleep through the night for 35 years. Think about it. Thirty-five years. Henrietta (Babington) Spink and Michael Spink, who have two severely disabled sons, Henry and Freddie, can’t sleep through the night because their boys don’t sleep through the night.

Henry, with profound and multiple learning difficulties, was born 35 years ago following a regular pregnancy and birth. While his brain scans are fine, he cannot walk or talk and, until recently, was responsive with limited muscle control. More recently, Henry has suffered uncontrolled epilepsy, with a massive 15,000 seizures in three and a half months while in hospital between November ‘22 and March ‘23 and, again, in April ‘23. Henry needs all personal care including feeding (through a PEG tube into his stomach). He is awake each night due to epilepsy, lack of continence, administration of medication or is just awake and needing attention. Henry has difficulty maintaining temperature.

Four years after Henry’s birth, and after 20 scans during pregnancy led all to believe Freddie would be normal, Henrietta and Michael’s second son was born with half a diaphragm and his organs misplaced. Innumerable surgeries later, Freddie has a restricted oesophagus which means every mouthful of food must be specially prepared so that he can swallow it or he can potentially choke. This has happened six times and is life threatening. Freddie has limited mobility and some speech. He is up through the night needing the loo or just being very busy. He needs monitoring all the time. Freddie has behavioural issues and suffers from anxiety.

Between them, the boys need caregivers 24 hours a day, seven days a week, and Henrietta is always ‘on duty'. Things we take for granted that Henrietta and her husband Michael can't do? Be spontaneous. Enjoy a night out which does not need to be booked two months in advance. Go to the movies. Leave your children with their grandparents for a mini-break. Do laundry once a week instead of several times every day. Go for a walk. 

Having two profoundly and differently disabled children is unusual – but the experiences of the Spink family in dealing with the social system are not. Battling bureaucracy. Lengthy legal cases taking years to resolve. Being let down by caregivers. Being let go by their care agency.

Henrietta and Michael are overwhelmed by the annual expenses required to help Henry and Freddie live. They need help and we can do it.