Both Henry (37) and Freddie (33) have had a difficult 2024-25. Henry has had to go into hospital three times with uncontrolled epilepsy since the autumn and appears far more susceptible to infections than before. Even small infections now lead to seizures and possible hospital admission. Freddie started collapsing in March this year, which ultimately resulted in an emergency admission to St George’s hospital. He had a total blockage (neurological rather than physical) and was fitted with a pacemaker. The cardiologists told us we had got there just in time. He then had to be re-admitted for a week with further complications. This all came out of the blue. We had both boys in hospital at the same time for a week.
All of this has been very worrying for everyone, not least because of the unpredictability of it all. Both boys are with us at home, and managing their health and the requirements that go with their disabilities is ever more time consuming. But we do everything we can to give them active, interesting and fulfilling lives.
It will be no surprise to anyone that the costs of maintaining this are ever higher, propelled by higher needs and by inflation. Our daily electricity costs continue to run at approximately ten times the national average and many other costs are not covered by the NHS or the Local Authority. We do our best but the boys’ costs are beyond us.
For a documentary on the family shown on UK television, see:
Our fundraising for the boys has always depended on our friends passing on the appeal by word of mouth or by email to a much wider audience, and its success depends on that.
Thank you for your support.
Michael and Henrietta Spink