Amy was a born a beautiful healthy little girl. When she was 19 months old, I noticed she wouldn't eat solid food, wouldn't sleep much, was very unsteady and wasn't responding to sounds as well. She was having "temper tantrums" which we now know was actually panic attacks because of her breathing.
At 20 months old, she got rushed to hospital as she went blue and was struggling to breath, she was later discharged. She had another 3-4 emergency admissions and they transferred her to a specialist hospital. After MRI scans found vocal cord palsy, she was discharged again.
After a few months, finally got admitted in June 2010. July 2010 she had a cardiac arrest in hospital and was transferred to ICU. We was advised that it would be kinder to turn her life support off but they also gave us an option of long term ventilation via tracheostomy, there was only one option for me - so she was taken to surgery the following day. She was given a tracheostomy and gastrostomy.
Within a couple of weeks of being admitted to hospital she lost her hearing, speech, swallow, had facial palsy and couldn't move anything but her eyes. After a long 14 month stay in hospital and amazing suport from doctors, nurses, physio, support workers, play specialists - Amy walked out of hospital in 2011. Amy had a number of procedures in hospital, hundreds of blood tests, MRI, CT, x-rays, ultra sounds, lumber puncture, muscle biopsy, nerve tests, surgery for trachy, feeding tube, also had appendix out and bowel malrotation. But finally we could take her home and enjoy her for as long as we could.
Amy's condition is life limiting but they have now found a treatment that is working very well to keep her stabilised, which is high dose riboflavin. Initially we was given days for her to live, then months,then possibly to age of 5.
Amy will be 10 in August and has never been so well. She is still got a long way to go but has defied all doctors how well she is. She has now had a cochlear implant and is doing amazing with that but still only communicates through bsl. She goes to a mainstream school full time and is a very clever, happy, kind little girl. And most of all - my hero.