I am from Scotland, UK. My son Matthew is 8 years old, has the rare condition sacral agenesis. It is a neural tube defect which has affected his spine and lower limbs, and he is doubly incontinent. Matthew (2lb, 14oz) and his twin brother Sam (3lb, 7oz) were born 7 weeks early, and there was no indication of the condition prior to birth. My partner and I were glad to see that they both were able to breathe on their own, and they just got better every day and went home after 4 weeks.

I had a very easy and healthy pregnancy, took the recommended folic acid, and had no health issues of my own. I was never shocked or scared, just glad that they were here and not in any danger. It’s one of those things that is meant to be, and both our boys are an absolute blessing.

Matthew is a wheelchair user as his legs are in a permanently crossed position. He is very keen to get in touch with someone of a similar age with sacral agenesis and, in particular, similar physical appearance as him. We hope one day to travel to America so that this dream of his will come true. I’ve already promised now anyway.

He hasn’t undergone any surgery as yet but probably will to help manage his incontinence issues. Almost once every year he has been admitted to hospital for 2 to 3 days due to dehydration after suffering from gastroenteritis, but this has, thankfully, been the extent of his health issues. No UTIs, which Iknow can be very common with his condition.

Matthew is a very active and confident boy. For instance, he loves Lord of the Rings and often organises groups of kids at the park to role play with him (including his brother, who doesn’t have much choice . . . mind you, and the same is true when he has to watch his brother Sam play football, which he also loves to get stuck into), and at school, he runs a Moshi Monster Shop at playtime!

He’s taken part in gymnastics since about 2 years old, so his balance, upper body strength, and climbing abilities are fantastic, and now he uses his own sports wheelchair. He often walks on his hands and tackles the highest rope-climbing frames in local parks very confidently along with his twin brother. Everyone who meets him thinks he’s a superstar, and his brother’s a wee gem, too, very caring and thoughtful, and both are typically hyper and great fun. I would say we have been doubly blessed.