Rowan W's quilt    (Quilt Closed)

Theme details

Penguins - Perhaps some planets on the label might be nice

Child Interests

Rowan is obsessed with penguins. This is his main love in life. He has loved them from an early age and owns around 25 penguin cuddle toys.

Rowan also likes space so the solar system and planets.

His favourite band is Greenday!

Rowan loves blue and that includes all shades of blue. He also loves orange (all shades), red, black and grey.

Biography

Rowan was diagnosed with Duchenne Muscular Dystrophy, this came as a huge shock to us. DMD is a rare, degenerative, muscle wasting condition with no current cure.

Rowan reached most of his early milestones but we did spot that he fell quite often as a youngster, he was also born with huge calf muscles (which we know now is a very common early sign of DMD in children).

It was when Rowan started school we realised he was physically a little behind his peers. At a Christmas play he performed in at school when he was in Year 1 we spotted he was unable to climb up the stage steps like the rest of his classmates, Rowan was crawling up them. We decided to take him to the GP who thought Rowan may have dyspraxia and he was referred to a physiotherapist. Due to COVID this referral was slightly delayed. Once the physio came to see him we knew something was seriously wrong as she referred him to a paediatrician urgently.

A few weeks later we took him to the paediatric appointment and Duchenne was mentioned to us. This was a shock as we’d never heard of it before. A few blood tests were needed to ascertain whether he definitely had it or not, it turns out he did and we were referred to his neuromuscular team. It’s been three years of many many appointments for him, new medications and we have seen his physical decline due to the nature of Duchenne.

Rowan is slowly losing his ability to walk and relies more and more on his manual and powerchair on a daily basis. He also needs help with everyday things such as getting dressed, bathing, brushing teeth and he needs constant supervision.

Rowan also has two younger siblings who help him around the house such as when he drops something or if he needs something fetching. They are really good with him and they make us super proud.

Rowan is such a bright, charming and funny young man. He has an amazing sense of humour and is such a positive person, he really helps us through some difficult moments. He takes everything in his stride and we couldn’t be more proud of him.

Patterns

Squares received

Card

Stitched by: Claire Tobias