Faith For Hope

 

Alyssa's Story
What Happened
Blog - Story Alyssa

 

 

 

This site is to try and help people to become metabolically aware and raise awareness of brain injuries through Alyssa Loates Story, Please read as it might well save you or someone you love from going through the same tragedy. On the left is a video of such an inspirational little girl called Alyssa who has OTC deficiency but wasn’t diagnosed until she was 8 years old when the condition almost killed her, doctors said at the time she was going to die but she managed to survive despite the odds but sadly has been left with a catastrophic brain injury. As a baby she vomited a lot and was taken into hospital a few times, the parents were sent home and told to just syringe her water, consultants said she just had a dairy intolerance and to use soya milk to feed her with, Alyssa was delayed with speech and did echolalia around the age of 3 year, her parents were told by the consultant Alyssa was under that she had global developmental delay, she then went on to be diagnosed with Autism, Alyssa’s vomiting become less often once she was off formula and choosing her own foods although vomiting was still an issue (being a very picky eater) her speech improved although it was typically autistic. On occasions Alyssa hallucinated and become almost feral, the local doctors said it was just a lack of glucose so parents gave her lucozade which seem to return her to her normal self, Alyssa had a lot of issues and challenges over the years and saw many medical and educational professionals who unfortunately always gave what seemed a rational explanation misdiagnosing her. 4-5 Months before her brain injury, she hallucinated, become delusional and very floppy, she was admitted to her local hospital and treated for suspected meningitis, once well she was discharged home again. A few Months later she got the noro-virus, at first she vomited a lot but soon become delusional and very floppy and again returned to hospital, only this time she almost died, One doctor did an Ammonia blood test which come back very high so treated her for OTC, unfortunately the Ammonia had already done incredible damage to Alyssa’s brain and once in London was only given 72 hours to live. Metabolic awareness can save lives, Alyssa clearly showed symptoms throughout her life which sadly doctors failed to diagnose correctly, Alyssa would have never nearly died or suffered a terrible brain injury which has greatly impacted her life if she was diagnosed correctly, Through Alyssa's story we hope that we can create Metabolic awareness.

 

 

 

 

 

 

 

 

My daughter Alyssa Loates who was 8 at the time got the Norovirus in march 2012, at first she had all the normal effects but then she started to go floppy and started to have confused speech, she ended up in Medway hospital and got worse,  she started fitting becoming critical.  Alyssa had seen doctors all her life and this condition was missed, it's a metabolic condition called  OTC defiency,  OTC is deadly and had already caused Alyssa's brain to swell so badly that it was crushing the primal part that controls her heart and lungs.

 

Alyssa was rushed to London where the doctors done an MRI, with the results from that the doctors concluded that she had only 72 hours to live, Alyssa's heart was stopping because of her brain,  Alyssa was past critical and death was the only medical certainty but then with being beyond the help of medical science and doctors she started to stabilize .. even so a few days later Alyssa had another MRI and a test for her neurological activity, the doctors called all our family in the room and broke the bad news, they told me and Sarah that her brain was as damaged as it could get and that she wouldn't be able to survive without the life support and that we would have to make the decision to turn it of, they said she wouldn't come off the ventilator, move, talk, see, or hear and that if we kept her alive we would only be being cruel... we were completely devastated.  Alyssa was in PICU on life support for 13 days and in a coma for over a month. The day come for them to take her of the life support.... they took her of and again against all medical science she breathed by her self even though it was neurologically impossible for her to do so.  Since that day the doctors stopped telling us what Alyssa would do and instead come to see, as the only thing medically they could tell us is that she shouldn't even be alive, one of the top neurologists in the country now calls Alyssa her Miracle Girl.

 

(this is the short lite version of events,  Visit the link (Blog-Story Alyssa) for more details)