My daughter Alicia is 12 and for 12 years she has been having problems with her heart. She has a condition called congenital junctional supraventricular tachycardia.

This condition is so rare we have only found one other family with this, in Texas. Her cardiologist had worked all his life but never met a child or adult with this condition. He had only ever read about this and he trained and studied in the States.

We were told when she get to puberty it would either get better or worse and unfortunately it has got much worse.

Her medication has been increased but she spends most of her time in a tachycardic state leaving her extremely tired and poorly.

The NHS have failed her with a failed procedure and now they are wanting to a temp the same operation again. No one knows the plan and no one knows what to do or which way to turn.

Since October last year she has become unstable and to make things worse her cardiologist who she has had since she was 3 has now retired.

she has been seen by another who has just graduated but doesn't fully understand her condition.

The only way would be to take her to London for more help and to see a consultant that may be able to help. but this would be private as he only works within the private sector.

I have been off work for the last few months with pneumonia and have also been hospitalised and not been able to work and as soon as I was ok to go back to work Alicia became more unwell.

We would normally be in a position to pay for the help she needs but as I have been unwell and unable to earn.

Any money not spent on Alicias direct care will be donated on.

Thank you for reading and if you can help, thank you if not just thank you xxx