Trek for Matthew

My son Matthew is 6 years old and was born with an extremely rare genetic condition, whereby he has a deletion of material on chromosome pairs 15 and 3. He also has hypospadius, is Autistic and is currently having investigations for epilepsy.

Matthews father and I found out we carry the deletions when he was diagnosed, and Matthew inherited both, one from each of us. He is the youngest of four siblings and it is likely his older brothers and sister are also carriers.

Matthew has faced many challenges thus far, and this will continue into adulthood, where he will need to be long term supported to gain any level of independence. Currently he requires full support in school and at home.

The impact of Matthew’s condition has been profound, he has had corrective surgeries, has learning disabilities, hypermobilty, speech, language and communication problems, global developmental delay, social and behavioural issues due to his autism, becomes exhausted easily and has pain in his joints, hands and feet, to name but a few.

We have, as a family, been lucky enough to have the support of several charities and organisations. This hasn’t just been to gain the knowledge and understanding of rare genetic disorders, conditions and diseases, such as Matthew’s. But also the invaluable emotional and mental space to work towards a new normal for our family and to be the best we can be, at a difficult time. Parents, carers and their networks face a huge challenge navigating the systems, processes and procedures that come with having a child with rare and complex needs, and guidance is a much needed part of this.

We would like to give something back to those organisations who have helped us and many other families like ours, who on the most part rely completely on donations to do the work that they do. Without them we would have been lost.

On that note, I will be trekking to the Mount Everest Base Camp, in March 2025, in Matthew’s name, to raise money for the charities named. The trip itself is entirely self-funded, and all of the money raised will be sent directly to the chosen charities, so they can keep doing the important work that they do.

I will be blogging, updating the designated page and instagramming the progress from my 18 months of training, and of course the trek itself! It’s bound to be equal parts painful as well as rewarding, and I’m expecting tears and injuries! So please follow the links below to keep in the loop.

I can’t wait to take you and of course Matthew on this amazing journey!

Many thanks,

Maura and Matthew