Just under a year ago, shortly after being born Olivia was admitted to Frimley Park Hospital after losing weight and struggling with food. A dozen doctors swarmed around her straight away. She was very unwell. Within a few hours they rushed her on blue lights to Southampton Hospital and that’s where we would all be unknowingly living for the following 4 months.
Olivia was retaining a lot of fluid and a few weeks after admission she suffered a respiratory arrest and stopped breathing in my partners arms at 4 in the morning. Fortunately they were able to resuscitate her and she spent the following 10 days in intensive care, sedated and full of tubes. Nobody could work out what the problem was.
6 weeks into our stay the doctors had an answer. They had taken bloods from all 3 of us and sent them to a special lab somewhere. Olivia had started to improve although she was (and still is) reliant on an IV feed that goes directly into a major vein over 14 hours of the day. A meeting was called which we thought was to discuss discharge. It wasn’t and they explained that a Olivia had a genetic condition called ALG6-CDG caused by both my partner and I having a very rare defect each which doesn’t effect us. Due to early symptoms they gave us a prognosis of 18 months - 2 years of life. She would suffer with dietary issues, low muscle tone, slow development and be prone to serious infections and seizures.
Olivia turned 1 in February. She’s still dependent on her IV feed and has a permanent line in her chest for it 14 hours a day. She’s non mobile and non verbal but a very happy little girl who loves nothing more than being outside. We were very fortunate to be housed by the council in a property with a small garden and I’m desperately scrambling to make it perfect for what will potentially be her only summer with us, doing what I can by myself with my limited knowledge and time. I work full time but my partner had to give up work to be a full time carer which drastically affected our income and budget to make the garden what she deserves.
I was hoping to raise some money so that we are able to hopefully fix the patio, make the entrance to the garden a bit more push chair / wheelchair accessible, get some specialist play/sensory equipment, additional equipment for her mobility needs and generally improve her quality of life to really give her the best with the time we have.
I've included a few pictures of our lowest points in hospital and also a more recent one of her enjoying a short trip out of the house to the shops.