Our story:

Myself and James have decided to sign up to the Manchester marathon (mental I know) and would be really greatful for anybody wanting to support us on this journey. We are running it for a charity that is close to my heart, CDG-UK.

CDG- UK is a national charity supporting those affected by Congenital Disorders of Glycosylation (CDG). CDG - UK is partnered with the UK Genetic Disordered Partnership Network, who support UK patients and families.

The charity was set up in 2013 by the parents of affected families so they have a real hands on approach of what it’s like when families receive such a rare diagnosis and how isolating this can feel.

CDG-UK keeps families updated on clinical trials, offers grants and support when needed and arranges meet up days for families.

For those that wasn’t aware my two children Lyla aged 7 and Lennon age 5 was diagnosed in 2022 with a rare genetic condition called ALG1-CDG. In the space of 6 weeks we got told Lylas diagnosis first and then came Lennons confirmed diagnosis.

This hit our family so hard.

ALG1 is such a rare genetic condition and in the UK there is only 3 known cases ( 2 of them being Lyla and Lennon), and 1 in the ROI, worldwide it’s approximately 160 known cases.

Unfortunately this condition comes with its downsides, both children have been treated for epilepsy and Lennon needs rescue medication to help bring him out of his seizures, muscle tone and balance issues is also part of the condition.

Both of the children are non verbal (although our house is the nosiest house ever!!) and they have severe learning difficulties which can make life and communicating very challenging, they will need support for the rest of their lives.

However nothing stops there determination to do anything you put at them, they love everybody they meet and you will always be greeted with a pat and a wave from Lyla and then from Lennon as he copies everything his sister does, they love to socialise and be around other children.

I know this marathon is not going to be easy but nothing is easy for my two kids but they show up everyday and give it their all and myself and Beth are just so proud!!

So please support the charity that continues to support families in times of need, any donations would be greatly appreciated and will really go a long way in helping families like ours ❤️

Thanks a lot

Nick