Fia during a recent visit to our East Sussex Community Building

Fia's story

We recently caught up with Lian, mum to Fia to find out more about what services they access at Demelza and how we have supported her family over the last few years.

“When our children use the hydro-pool at Demelza; they are equal. For Fia, who has numerous medical problems, she can have freedom – she can be just like her big brothers and sister. It does her the world of good and the four children can play together - like all siblings should.

“Fia is our youngest child and for the first few years of her life we saw Fia learn to walk and talk; just like we had with our three previous children. But there were some warning signs that something wasn’t quite right – Fia vomited constantly and she was slower to reach her milestones. When Fia turned three, our lives changed forever.

“An MRI scan revealed massive brain damage and Fia was diagnosed with Alexander disease; a rare neurodegenerative brain disease. Over the years Fia’s health has deteriorated – cognitively she is still the same mischievous little girl, but the ability to use her body has changed beyond all recognition.

“When Fia started having seizures, Demelza supported Fia to attend a specialist school for children who have complex needs. Fia used to stop breathing up to 15 times a day needing resuscitation, but this improved once she had a pacemaker fitted. It was just awful but again Demelza supported Fia to get her health needs met.

“Fia has a great time when Demelza’s Community Team in East Sussex take her out and I feel at ease knowing Demelza’s Registered Nurses and Health Care Assistants can tend to her very complex care needs. For those hours that she is out enjoying herself, I can do the everyday chores that are just impossible to do when Fia is at home. Fia needs constant supervision to stay safe so to be able to get upstairs and tidy-up is a dream. Fia also loves visiting the care team at Demelza’s base in St Leonard’s; a safe space where she and her big sister Flo can paint, play with the toys and have a much-needed change of scenery.

“The COVID-19 pandemic has been incredibly hard for many families and Demelza stepped in. Having that extra pair of hands to help care for children like Fia or having someone to call on for help, advice and support is invaluable for families like ours. Every little bit helps and we are so very grateful to those who donate to Demelza and make their services possible.”