It is common to read about donations made to large charities by big lodges, but so much of the support we give our local communities comes from lodges of all size, and to organisations both large and small.
Recently, one of our smaller lodges found the time to dig deep to support a single family in their journey of care for their new arrival.
Baby May was born in March 2024 and brought immediate joy to the lives of Kirsty and the rest of the family when she was born. However, things quickly took a turn as she started having seizures and was moved to the special baby care unit so that they could try to control these increasing number of seizures.
After a short stay in hospital, the family were excited to be allowed home and the family was finally complete in the comfort of their own surroundings.
Sadly, after just 2 weeks away from hospital, another seizure occurred which caused May to be blue-lighted back in to hospital.
During an ensuing 6 week hospital stay, they found she had a very rare genetic condition SCN8A
SCN8A is so rare it doesn’t really have a name, and so was nicknamed “Cute Syndrome” by the parent of another child with the condition.
Sadly, the list of possible effects of this condition include seizures that don’t respond to medication, frequent hospital admissions to try to contain the daily seizures, elevated risk of Sudden Unexplained Death in Epilepsy (the condition is closely related to epilepsy), Feeding difficulties, Mobility challenges, as well as developmental delays and additional health complications.
Kirsty is lucky that Baby May is receiving a huge amount of support from consultants, physiotherapists, epilepsy nurses and the complex care team, but despite this May can still have regular seizures and up to 40+ a day. This can mean regular and prolonged visits to various hospitals across the South West which can provide this specialised care.
Kirsty has a personal connection to Lodge Torridge, based in Great Torrington in North Devon, and so when they heard of the challenges she and her other children were having in caring for Baby May they wanted to help out.
As May grows she will require specialised equipment to support her development, and the money donated by the lodge will go some way to help purchase and maintain that equipment.
The lodge was thrilled to be able to support a local family in this way and help such a special child thrive as she grows.