“Sparks – and the research they fund – is so important because there are still so many conditions that we don't know enough about.”
Trevor is dad to Elsie and Rosabelle, who both sadly passed away before they reached their first birthday. His two girls have inspired him and his family to raise money for Sparks to help fund life-saving research.
Trevor and Cala’s second daughter, Elsie, was born in November 2015, 14 months after her big sister, Rosabelle. Sadly, due to an undiagnosed condition, the family lost Rosabelle when she was only 36 hours old.
“When Elsie was born, there was nothing obviously wrong with her,” says Trevor. “She was in the special care unit for four days as a precaution, but for the next three months, everything was ﬁne.
“We thought something wasn’t right after Elsie’s first swimming lesson. She seemed very tired and rather pale. My wife went to the doctor who phoned for an ambulance.
“We stayed in hospital overnight, and the next day they concluded that the cause was a milk allergy because Elsie was struggling to feed and was being sick. She was very jittery – particularly in her arms – but it didn’t seem a major concern.”
Elsie continued to be sick and lose weight, but it was also becoming apparent that she wasn’t developing physically either; she couldn’t lift herself or move her arms much.
When Elsie was six months old, the results of an EEG test concerned neurologists enough for them to arrange further scans. A few weeks later, when Elsie became distressed and very cold, Trevor and Cala took her to A&E. She was admitted to Royal Alexandra Children’s Hospital in Brighton, and from there, the neurologist referred them to Evelina London Children’s Hospital.
“Elsie had a brain scan, and within a few hours, doctors told us it really didn’t look good,” says Trevor. “The next day, we were told that Elsie was suffering from a form of leukodystrophy (a group of rare genetic disorders that affect the central nervous system), but they had yet to confirm which one.”
The following week, Trevor and Cala were given the heart-breaking diagnosis: Krabbe disease, a rare condition that causes progressive damage to the nervous system. Doctors didn’t expect Elsie to live beyond two years old.
“There wasn’t any treatment Elsie could have,” says Trevor. “We just made sure she was comfortable and pain-free. We were in Evelina hospital for just over a week and then went home. Once Elsie was diagnosed, the doctors wanted us to spend as much time together as possible, out of the hospital.
“The family time was really precious. We spent two weeks in Cornwall. Elsie couldn’t see much by this stage, but she loved hearing the sea and feeling the sun on her face and the warmth on her skin. We were able to wind down and build some strength. We have some very happy memories from the trip with Elsie.”
Elsie passed away ﬁve days before her ﬁrst birthday.
Fundraising in memory of Elsie
“At Elsie’s funeral, several people asked if we’d do any fundraising in Elsie’s memory,” says Trevor. “I did some research and found Sparks. I hadn’t heard of the charity before but learnt they were funding research into Krabbe disease, so I wanted to support them.
“We’ve since found out that Rosabelle also suffered from Krabbe disease and a cause of neonatal death is often linked to genetic disorders.”
Trevor and Cala opened a fundraising page for Sparks in Elsie’s memory and the donations started rolling in. Trevor and his family increased their fundraising in support of Sparks: Trevor took part in a 10k race, the family held a fete, and they organised a 100k walk from Arundel to Eastbourne, walking the route over two days. Trevor, an accountant, also volunteered in the Sparks office for more than a year.
In total, Trevor and his family have raised more than £10,000 for Sparks so far to help fund research.
“Sparks – and the research they fund – is so important because there are still so many conditions that we don't know enough about,” says Trevor. “A cure is the goal, but we’ll only get that by investing money into these vital research projects.”
For critically ill children like Elsie and Rosabelle, there’s no time to lose.
With your help, we can fund life-changing treatments that will help children in the UK like Elsie and Rosabelle who have rare and complex conditions.