Digby D's quilt    (Quilt Open)

Theme details

Cars - Cars, sports cars and the odd monster truck. Some Lego on the label might be nice. Please see interests for full car details!

Child Interests

Digby is car mad, seriously car mad. He has over the years had ‘obsessions’ with a variety of vehicles! Monsters trucks through to drifting and sports cars.
Through many years of charity shop hunting he has accrued a very respectable collection of vintage and current model cars, Hot wheels being his most favourite. He adores building with lego and despite difficulties with learning and attention span he can sit building lego constructions for hours.
He has a colourful soul and loves all colours of the rainbow! Pink, purple and orange are possibly his least favourite but he still defends them. He does like to favour a black pen when drawing. He often surprises us all by proclaiming that a colour is ‘so beautiful’ so he is open to colour.

Biography

Digby was tested aged 2 for the cureless and evil illness Duchenne Muscular Dystrophy after an older sister was diagnosed as a carrier of the condition. Until then we had noticed that his physical performance was slow and even joked about his cute waddle and other mannerisms.

Digby’s diagnosis was crushing. Our beautiful smiley 2 year old son was given a devastating prognosis. His life expectancy was late teens to early 20’s, non ambulant by 10 and slow paralysis on body limbs and organs would cause a shortened life.

As soon as the official diagnosis was shared, Digby, just 2, was fortuitously enrolled on a clinical trial at Great Ormond Street Hospital. This involved weekly infusions, various operations for port catheter device and muscle biopsies.

7 years later the living legend that is Digby still receives a weekly infusion at GOSH. In covid times dosing continued but was administered at home via a home nursing service and drugs couriered from GOSH. This trial will not save Digby or cure DMD but his hard work will make future generations potentially have a fuller future.

To this day dosing continues and our hero warrior fights the good fight.
Digby has a wheelchair but still has the luxury mainly of choosing when he needs it. With house adaptions he has a through floor lift which allows him to remain in a bedroom upstairs with his family. Every day is a new day. Whist it brings new joy and adventures, it also delivers new fears and worries.

The only thing I can say about everything, with absolute certainty, is that Digby is the best boy, the greatest showman, a born entertainer. His heart is huge and he exudes joy. A true warrior and an absolutely wonderful son.

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