Our Pal - Lizzie A

Story written 2012

Elizabeth is 12 years old and was diagnosed with Cystic Fibrosis when she was eight months old. Up until four years ago Elizabeth was living a relatively normal life, although she was still having 2 sessions of physio a day, nebuliser and medications.

As her health started to deteriorate she had to have IV antibiotics every three months which meant a two week stay in hospital. I (Mum) was trained to do the IVs at home which then meant she could carry on with school and her life could be as normal as possible. She was also diagnosed as an insulin dependant diabetic.

Recently she has been very poorly and it was decided the time had come for a transplant assessment at Great Ormond Street. We went there in August 2011 and she had all the tests and they decided she wasn’t quite ready for transplant and asked us to return in February 2012.

During those six months Elizabeth started using a wheelchair and needing oxygen. She is having her IVs every six weeks now and has to stay in the hospital for the first two weeks.

We went back to GOSH and she is now active on the transplant list.

Update 14th July 2013

We are sad to say Lizzie passed away last night, she was in ICU and free from pain.

Update 30th March 2013

Lizzie is still awaiting a lung transplant and is in hospital every 6 weeks for 2 weeks. She is not going to school anymore and has a tutor who teaches her at home.

Lizzie is now the proud owner of a pony… not that she can do much with her at the moment, but she does enjoy getting out in the fresh air.

Update 3rd March 2013

Lizzie is still waiting for a lung transplant and is spending 2 weeks in hospital every 6 weeks which is hard but it is keeping her as well as she can be. She is actually in hospital at the moment.

Lizzie loves receiving cards and letters and also gets very excited when a parcel arrives.

Lizzie no longer attends school and she has a tutor who sees her at home.

Thank you for all you do, it keeps her smiling.