As I am sooo bad at keeping a blog I have created a facebook group called....... Albinism Matters. This will give a better platform for others to also add helpful hints, look forward to seeing you there

Good news

Just got the email from Dr White, my children thankfully do not have HPS.

Bloods have been taken and are crossing the Atlantic as I type

The blood test is scheduled for next Tuesday

Hermansky Pudlak Syndrome

Well I have just got off the phone to a great team in New York, I am going to have my kids tested for HPS.

My son has had ill health for the last couple of years and now my daughter has been having nosebleeds and her legs are black and blue, she also has lots of little skin breakouts that keep bleeding. Our family doctor ran some bloodwork for clotting and haemophillia screening which came back normal which we were expecting.
I will blog a little more often- I know I'm dreadful for updating my blog but I will trya

Greetings Cards

If anyone needs greetings cards made up in a large print www.cards-to-remember.com can do that for you, email at info@cards-to-remember.com for further information

Moorfields

Just wondering if anyone else has experienced the new Children's wing at Moorfields.
Considering it is 'THE' eye hospital in London, I was amazed at the design. The waiting room has a floor to ceiling full width glass wall!!!!! There is a horrendous thing in the middle called the pod which is shaped like an onion and has a little play table running around it's perimeter- of course a VI child cannot see that this bulb shaped monstrosity actually bulges out at head height when they are playing at the table and yes my daughter did bang her head. The children can play inside the pod, which has a slope at the entrance (Yes a slope in VI children's play area). There is a cramped creativity corner along the glass wall with play leader with supply of colouring pages but they are only on bright white paper and the pictures are not well defined and to top it all a portable TV with 14" screen- did I mention this was a specialist eye clinic waiting room???

I am flabbergasted that with the money spent on this building, no thought was given to the clientele. Luckily on the 2 occasions we have been up there it has been pouring with rain, dread taking my extremely photophobic DD up there on a sunny day, she will be sooo miserable

My son passed his driving test- yeahhhh

Your child will never..........

We have probably all been told what our children will never do and always wondered what they can do. OK my son is in the minority of people with albinism able to drive,my daughter like many will never be in that category


As you can see my daughter uses a symbol cane and is registered partially sighted. She is 7 and here are some of the things she has achieved over the last couple of years

Driving with albinism

I've got to share my son's latest achievement- he is learning to drive, that is one sentence I never thought I would write! He was always borderline then a couple of years ago his acuity went downhill and we were told (and we prepared for) the news that his vision would not meet UK driving requirements. Then he changed to coloured contact lenses and he could read more of the chart and the golden statement was announced- Your eyes are good enough to drive. My face must have said it all so the doctor reassured me that there are many people with worse vison driving- can't imagine why I didn't find that reassuring. Anyway he started driving last summer then when we tried to book his test we realised that he didn't have his medical conditions listed so his licence had to go back for medical review -this took 4 whole months!! His licence was reactivated and he took and passed his theory test last month ( and got 100%) and will be taking his practical test in a couple of months.Guess that you will all be wondering what sort of driver he is, actually he is a good driver, his instructor reckons he is her most capable student right now. He is very observant as he drives and because he is aware of his limitations, he is very cautious and sensible- very unusual for a teenager. Hopefully in a few weeks I will be able to post that he passed his test, fingers crossed.