Helping Henry and Freddie

We have to fundraise for our sons, Henry and Freddie Spink, who are both

severely disabled. Both of them live at home with us full time. Our support is

essential for them to lead fulfilled lives, for keeping them safe and looking after

every aspect of their lives.

Henry is 34, and cannot walk or talk, and has uncontrolled epilepsy. We have been warned of SUDEP [sudden unexpected death from epilepsy]. He has emergency epilepsy medication and has to be monitored at all times. He was in hospital in April with a massive episode of seizures, suffering over 1500 in two and a half weeks

and it was a miracle he survived. End of life was discussed 8 times. He cannot

walk or talk and needs all personal care including feeding. He is doubly

incontinent. He is awake each night due to epilepsy, lack of continence or is just

awake and needs attention. He has difficulty maintaining temperature. He has

profound and multiple leaning difficulties. Every aspect of his life is organised by

us. He lacks capacity.

Freddie is 30, and is autistic with severe learning difficulties. He needs support for all his personal care. He has a restricted oesophagus due to having been born with a diaphragmatic hernia that needed surgery at birth and spent 6 weeks on full

life support. While on life support he suffered a stroke. The restricted oesophagus means every mouthful of food has to be prepared in a way that he can swallow it or he can potentially choke and has to be admitted to hospital for emergency surgery. This has happened 6 times and is life threatening. He has limited mobility and some speech. He is up through the night needing the loo, or being very busy. He

needs monitoring all the time. He has behavioural issues and suffers from anxiety. All aspects of his life have to be organised by us. He too lacks capacity.

Funds are continually needed throughout the year for the care of the boys. We are overwhelmed by the annual expenses. The very high level of need for both of our sons means we are continually struggling to take care of them properly within our own limited resources. The current inflationary pressures which are affecting

everyone are hitting us particularly hard.

The boys were diagnosed on the 100,000 genome program in August 2018 and

both have incredibly rare disorders. Henry has Pura [350 in the world] and Freddie has RLIM [85 in the world]. We are working hard with American scientists to

match their gene variants to drugs. This could radically alter their lives. Henry,

despite his disabilities, has a completely normal brain – zero brain abnormality.

Thank you from the depths of my heart for your support

Henrietta

For a documentary on the family shown on UK television, see: https://www.youtube.com/watch?v=kcETh_wDPb4