Oscar B's quilt   (Quilt Coming Soon)

Theme details

Vehicles - Vehicles of all kinds. For the label, he does like maps, could we do something around the area of Burbage in Leicestershire?

Child Interests

Yellow is his absolute favourite colour!

Interests are taking things apart to see how they work, cables and electronics, construction toys, watching his iPad, looking at maps, drawing and colouring, asking lots of questions!

Biography

When Oscar was born we didn’t suspect anything was wrong. It was only as he grew older that it became evident he was behind on a number of milestones. Other diagnoses had been resolved and the same symptoms persisted. At two years old Oscar was still wobbly on his feet and wasn’t talking.

Oscar was referred to a paediatrician and as parents we didn’t contemplate anything serious was wrong. We still recall comments from the paediatrician regarding how Oscar was getting up from the floor, utilising his knee to push off, much the same as many of us do when we get into our older years, but not OK for a two year old.

The results of a full blood test indicated high levels of CK which often indicates muscle breakdown. A full DNA profile revealed he had Duchenne Muscular Dystrophy.

Both the high CK levels as a term was alien to us, as was Duchenne Muscular Dystrophy, commonly abbreviated as ‘DMD’.

‘Googling’ as many of us would do, and information from the paediatrician explained what the condition is and that it affects about 100 boys born in the UK every year. It is a progressive muscle wasting condition which currently has no cure. Life expectancy is roughly mid-twenties, though hope that medical advancements will help extend the life expectancy of all boys with DMD.

Oscar uses a wheelchair to travel longer distances, though was able to choose his favourite colour for this, currently yellow. In time he will eventually be in a wheelchair full time.

He loves to play with his friends but can find it difficult to keep up and often falls over.

Oscar takes steroids every day to help prolong his muscle use, though these come with their own side effects and risks and he has to do daily stretches to help maintain range of movement.

He also has regular heart and bone scans, physio and hospital appointments which he is not a big fan of!

Oscar has always been a kind boy with a lovely personality that enriches everyone’s life that he is part of and we hope for a cure one day.