Tirion Ray had a normal childhood, no issues nothing of note at all (apart from those Teenage Diva Years) until she was 18 and 3 months old.
Princess Tizzy started complaining of headaches and feeling poorly. No one knew how poorly she was (not even her parents) as she kept going to work each day and going out with her friends every weekend. It wasn't until 23rd Sept 2013 that we realised how bad it had got! Our beautiful daughter had 3 seizures in our GP's surgery (thank goodness it was there!!) and we went on our downhill jouney from there!
After loads of invasive tests, (we hold our hands up to the switched on registrar who in the early days thought it might be Mitochondrial disease and arranged some tests). We found out 1 week after our Royal Highness had gone through a Brain biopsy that we had both given her a faulty Mito gene called POLG1.
This gene is one of the ones responsible for the "recipe" to make energy in each Cell. in our body.
For our beautiful daughter it means that the cells in her brain don't make enough energy for her brain to function as normal. Whenever a brain cells do not function as normal it means incorrect electricty in the brain, resulting in seizures. Right now our daughter is on 6 Anti Epilepsy drugs (AEDs) at their maxium or over maxium dose, and she is still having seizures. The recommended medical maxium is 4 AED's
Recently we lost a very dear friend who had the same genetic mutation as our beloved Tizzy and she was up to 7 AEDs, it had got to the point where they could do nothing else for her.
POLG is a very difficult disease to treat, we have nothing left apart from hope. Our hope at the moment is Tizzy's "Get better" fund. To give Princess Tizzy what she needs, we need at least £500 per month. I can not put a price on life, especially my own daughter's! What else can I do except ask for help, we can only hope that our "Get Better Fund" will help!
- HELEN MAY
- Paul Laver
- Mariona Arroyo
- Sofy Large
- Frances Light