Twins Hope and Lucas were the longed-for result of fertility treatment for Jason and Rachel Willingham, but from the start it was apparent that Lucas was not developing as expected.
Lucas, who is now eight years old, was poorly from birth and found swallowing, sucking and even crying hard work. He had to be tube-fed due to recurrent bouts of aspiration pneumonia and when he was six months old he had his first seizure.
Lucas' mum, Rachel describes his journey from his diagnosis to receiving care at Little Bridge House and Little Harbour.
“The first two years are a blur,” said Rachel, who was in and out of hospital with her son as doctors tried to stabilise him and find out what was causing his problems. Little Lucas had to have a tracheostomy to help him breathe and to manage his secretions and a gastrostomy to feed him. His seizures were classed as drug resistant and he is visually impaired.
Through all of this, no one could tell Rachel and Jason what was wrong with their son. It wasn’t until last year that a mutation was found in Lucas’ genes, and it is this tiny fault that is believed to be the cause of all his difficulties.
But, as Rachel explains, “this is cutting edge technology and more research needs to happen into the gene’s function”. “We sit in a limbo-land of no diagnosis and Lucas is referred to as a SWAN (Syndrome Without a Name),” she added.
Children’s Hospice South West came into the Willinghams’ lives just after Lucas had his tracheostomy when he was 19 months old. It was at about this time that Rachel and Jason decided to move their family to Plymouth from London to be close to Rachel’s family.
“It was very obvious we couldn't sustain our fast-paced lives with busy jobs and twins - one of whom was very poorly,” said Rachel.
Their new community nurse referred Jason and Rachel to Little Bridge House, at a point when they had “reached rock bottom” and were “sleep deprived, traumatised and struggling to cope”.
They later moved to Little Harbour in St Austell as it was closer to their home.“My one regret is that we didn't have the support we gained from Little Bridge House, and now Little Harbour, earlier in our journey,” said Rachel.