I always have enjoyed reading the medical literature about the other effects my genetic deletion (PAX6) has on the body apart from the eyes. I was also interested to see the similarities and differences between just having aniridia and having WAGR syndrome. I have never lived close enough to take part in research in London so when my good friend Jenny, who has WAGR, came back from her testing at the National Institute for Health (NIH) as part of the study and told me they were taking aniridia patients I decided to sign up.
Lots of questionnaires, had to be filled in and after speaking to my parents, scratching our heads trying to remember back, trawling through 2 large packs of medical notes and educational statements – we filled everything in.
Today my parents came to collect my guide dog Sandie to take her for her holidays and will bring her back when I return from the NIH
Guide dogs are allowed to travel in the cabin of the plane to another country using a pet passport but this costs around £500 in vets fees, vaccinations and other medications the cost of which is not (and should not be) paid for by Guide Dogs. Obviously this is a lot of money to find when you have your own flights to pay for and other expenses. My other concern is from a welfare point of view I feel it would be unfair to make her wait the 7 hour flight and longer to go ‘busy’ as she only relieves herself on command. She would be very upset if she couldn’t hold on and had an accident. I remember finding her in the kitchen cowering when she had a urine infection and had a wee on the dinning room floor. The temperature is obviously much hotter than it is here in the UK and therefore she would take at least 2 weeks acclimatising and would not be able to work as she would need to stay in the shade to keep cool. It is for these reasons I choose for her to spend her holidays in the UK when I go abroad.
It’s not easy though as I feel like I missing part of my body. I frequently think I hear her scratching, sniffing or dreaming when she’s not here. Most amusingly I ask my cane if it wants a ‘busy’ when we get to a usual patch of grass and I tell Graham to ‘Find left’ and ‘Forward’. I’m sure in the next few weeks I’ll find myself telling my cane to ‘Forward’ when it is safe to cross the road.
I’ll miss the head on my lap on the metro, the toys on my lap in the evening when I’m watching tv and it’s play time. You always have soft silky ears to play with, headstands to cheer you up and warm feet where she curls up and has her bum on one foot and head and paws on the other.
She’ll have a fab time with lots of free runs, cuddles and lots of time to rest and will come back wagging her tail and raring to go out to work.
Aniridia Network 