Hello

Tommy is our beautiful boy living with a rare genetic condition called MECP2 Duplication Syndrome. As far as we are aware he is one of only 2 children in the Republic of Ireland with this condition. He is affected in many ways. He has global developmental delay, low muscle tone, he has feeding challenges, and he is prone to respiratory infections. It is a progressive, life-limiting condition and we know some kids will go on to have seizures and few reach adulthood.

What that means for Tommy now is he can't yet sit by himself, he cant walk or talk, he is mostly tube fed, and needs a lot of adapted equipment to build strength and support his body.

We know that his needs will become more complex as the years go on but for now we would love to make it easier to get out and about to enjoy life.

His current buggy is big and heavy, it doesn't fold in one piece...it barely fits in the boot of our car! He needs the support it offers but there are other options available (see pics) that would be lighter and easier to manage. We used to enjoy getting off the beaten track and exploring, we'd like to be able to do that again. We also need a suitable car seat for him.

Some friends and I are aiming to walk the Women's Mini Marathon this summer to raise funds for new equipment for Tommy.

If you can't donate, that's all good...but if you would like to learn more about our special little boy and his journey with MECP2 have a look at his Instagram page @tommyandmecp2