A DUNFERMLINE teenager who needs constant care can still get the support she needs thanks to generous donations to children’s charity CHAS so they can continue their ‘virtual’ hospice.
Shortly after birth, Olivia Westgarth was diagnosed with a rare metabolic condition called Propionic Acidemia and has since required constant care.
Her condition means that a non-functioning enzyme can’t break down certain amino acids in protein, so toxins can build up in her system if this not managed correctly.
Since Olivia was three, she has been spending time at the CHAS-run Rachel House in Kinross, which her mum, Gwen, describes as “a truly special place”. The family also use the CHAS at Home service.
Gwen said: “In the early years, Olivia spent a lot of time in hospital and visiting Rachel House helped her develop her independence and she also formed special relationships there over the years with staff and other families.
“She loves everything about her respite visits, from taking part in the fun arts and crafts sessions to getting her nails painted and going in the jacuzzi.
“It’s good for me too when Olivia is there as it allows me to work or to take some time for myself, safe in the knowledge that Olivia is being given the opportunity to make friends and have new experiences while her medical needs are being met.”
Sadly, because of the coronavirus pandemic, Olivia, who is now 13, can’t go for her regular visits to Rachel House and is following government advice by shielding at home in Dunfermline with her mum.
Despite this, both say they still feel strongly connected to CHAS at this challenging time as the care offered extends much further than the walls of Rachel House.
Gwen can call CHAS specialists at any time, day or night, and through the charity’s ‘virtual’ hospice which was launched at the beginning of the pandemic.
Olivia can still take part in her beloved arts and crafts sessions and participate in other fun activities, such as visits from the Clowndoctors, who she is a huge fan of.
This continues to be possible thanks to the response to the CHAS Christmas Appeal, which raised £400,000 for vulnerable children just like Olivia across Scotland.
Gwen added: “It’s wonderful because it means Olivia still feels part of Rachel House and it’s great for me too because it means I have round-the-clock access to medical and pharmaceutical advice.
“This truly is a vital lifeline and it is hugely reassuring to know I can always just pick up the phone and get answers to any questions I have, night or day.”
Like most other teenagers across Scotland and the whole of the UK, Olivia is missing her school friends at Woodmill High School.
“That’s probably the hardest thing for her as she is such a bubbly, sociable girl,” Gwen explained.
“She also misses the simple things we all took for granted before like going to the cinema or going shopping, which is probably her most favourite thing to do.
“It can be hard for Olivia as she loves going places but I tell her it’s because of the germs we might catch and she understands.”
Gwen works as a criminal defence lawyer but has been furloughed at the moment, allowing her to provide full-time care for her daughter, who needs tube-fed for 22 hours each day.
She added: “It is actually not that unusual for us to spend a lot of time in the house together, just the two of us as, over the years, we have spent a lot of time in hospitals and then at home while Oliva recovers.
“I also feel lucky because my amazing chemist delivers Olivia’s feeds and also her medicines, which she needs to take five times a day.
“It is hard in other ways such as not being able to go outside at all or pop to the shops and I don’t have any care help as such. I do have good friends though who have kindly offered to do shopping for me which has been a Godsend.
“We’re trying to do lots of different things and generally just stay upbeat.
“Even though Olivia can’t eat, she loves to bake and cook so we have been doing lots of that and CHAS are going to send her activity packs which she’s really excited about.”
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