I'm running the London Marathon in April to raise money for Demelza. They are a charity very close to my heart as they have been supporting my family for the last two years, since we received a life-changing diagnosis for our son, Tom, at their South East London hospice in Eltham.

How we came to Demelza

Tom was initially diagnosed aged 15 months with Leigh's Disease, which is a type of mitochondrial disease that is life-limiting. Children with Leigh's typically don't live past the age of 6 or 7. This was how we came to be referred to Demelza. About 8 months later, genetic testing showed that Tom actually has an extremely rare genetic condition, which is called MORC2-related disorder. Very little is known about this condition and what the prognosis is, as it was only discovered a few years ago.

Where we are now

Tom is now aged 3 and a half now and is a smiley, happy boy that loves being part of the action. He loves all types of cars; playing and listening to music; people singing to him; reading books especially lift-the-flap ones. His favourite shows on TV are Numberblocks, the Twirlywoos and Mr Tumble. He really likes drawing with markers, silly slapstick humour and funny noises.

Sadly, Tom faces a lot more challenges than a typically developing three year old. He cannot move around on his own and needs a specialist buggy-wheelchair or postural seating at all times. He is pre-verbal which means he makes noises, but no babbling or words. He cannot eat with his mouth, so he is fed a blended diet (pureed food) through a feeding tube directly into his stomach. At the moment, he is making very slow progress which is brilliant and was unthinkable two years ago.

How Demelza helps us

Being part of the Demelza community and having their support has really been a life saver for me and our family.

We have care at home twice a month, where a carer comes to our house and looks after Tom so I can have a bit of a break or do something with Cara. Our previous carer even looked after Tom on the day of our wedding, collecting him from the hospice in his wedding outfit and minding him through the ceremony and the photos!

We go to a stay and play session once a week in the Eltham hospice where Tom can hang out with his buddies (there is a little boys crew at the moment) and I can have a chat with their mums over a cup of tea and a slice of cake - there is always cake :)

Having other mums who are at the same stage as we are, and also ones who are a bit further along in their journey of having a child with complex health needs, has helped me so much. Without Demelza, it would have taken me longer to make those connections and feel less alone.

Tom has also stayed at the hospice overnight when they offered respite - this was also so important to give us a break. He goes for daycare there at least once a month and it is so reassuring to know that he will be looked after by a team who are not fazed by his needs and really care. While he's at the hospice he gets to hang out in the sensory room, have art therapy and music therapy, meet the therapy dog, plus outings to the cinema and even once had a trip to Legoland!

Demelza also offer step-down care where children who are being discharged from hospital can go as a bridge to going home, and of course, end of life care and bereavement support. I want them to be able to keep offering all these services to as many families as possible, to help them through this journey which can be very tough at times but also can have many moments of joy.

I'd be very grateful for whatever you feel you can donate. Thank you ☺️