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Below is a snippet of our PKU life... thanks for taking the time to read it xxx 

Our beautiful girls Olivia & Ruby were both diagnosed with PKU a few days after they were born.

Our world came crashing down when we were called into the childrens hospital that day 20th August 2015 to be told the devastating news.

I remember every second of that day, the consultant and dieticians were trying to explain it to us but i couldnt hear what they were saying, we felt like we had been hit by a ton of bricks. All i could hear was your babies have a very serious condition called PKU.

Not only had we never heard of PKU before, everyone we told or spoke to about it they had never heard of it either. We felt so isolated, and we just could not get our heads round it. If i am honest i still cant come to terms with it now. The life you thought you were going to have with bringing up your 2 most beautiful babies is a completely different life to the one it will now be.

I felt a sense of guilt for a very long time (even now somedays) because our girls have PKU because me and my hubby both have the same faulty gene. 

1 in 10000 babies are born each year with PKU and both our babies have it.

Life is very hard with twins but twins with PKU is off the scale most days.

Its extremley stressful most days.The only way i deal with it is making sure im totally in control of it.

You have to make sure the girls have a protein supplement 3 times per day. The supplement is horrible, it smells discusting and makes the girls heave. But they have to have it in order to keep their protein levels down.

Ruby is on 8.5 gm of protein per day

Olivia is on 8 gm of protein per day.

From the moment we wake up its the first thing on our mind, and the last thing on our mind before we go to sleep

Every morsal of food they are allowed has to be weighed, and if they dont eat it all , it has to be weighed again even if you have to scrape it off the floor, so we can work out how much of their allowable protein they have had.Most of their food has to be made from scratch.

Ie bread, as "normal" bread is too high in protein.

Av slice of bread is 4gm of protein so this is half of the girls allowance.

I have to take the girls bloods every friday and send off to be tested to check there protein levels. If to high or to low the diet has to be changed. So over the weekend your worrying and hoping there levels come back normal.

Holidays abroad, well thats a whole different story ..... 

Going out for meals ...

Having an ice cream at the park...

They are just a few things that people take for granted.  

You can not take your eye off the ball for 1 minute.

You have to keep your child healthy as untreated PKU can lead to brain damage. Imagine that weighing down on your shoulders. Its tough very tough.

You are scared to let them stay with anyone ie family/friends or go to parties incase they eat or drink something they shouldnt.

There are no days off  its 24/7 every single day... its relentless..

We wouldnt change our beautiful girls one bit, i just wish i could take the PKU away from them.. It breaks my heart..