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LoveQuiltsUK - Rowan C's quilt

Rowan C's quilt    (Quilt Closed)

Illness: Tubulinopathy and Malformation of Cortical Development

Theme: Postman Pat and buses/trains/cars

Date opened: 17th Jul 2019
Date closed: 9th Aug 2019
Deadline: 26th Nov 2019

Photo of Rowan C

Child Interests

Rowan adores Postman Pat - his favourite thing in the whole world. He has learned a couple of words and one of them is 'Pat'!
Rowan also loves doors and gates, watching cars, trains and buses, Teletubbies and nursery rhymes. He loves hydrotherapy and horse riding at Arrow, our local riding for the disabled RDA Centre.

We are not sure what colours Rowan can see, if any, but he does appear to notice red and green.


Despite a difficult and monitored pregnancy, Rowan was was born a 'healthy' boy in 2014. Things changed when the community midwives noticed his sacral dimple a few days later. At 13 weeks we saw the paediatrician who was not happy with any of his development at all - he was floppy, not thriving, not holding his head up, not tracking with his eyes and was generally miserable.

Then came multiple tests, in-patient stays in London, bloods, MRIs, EEGs, physio assessments and surgery. Originally they thought it was a fatal mitochondrial disorder, so we were pleased in a way when we were told it was a life-limiting neurological malformation instead.

At about 8 months old Rowan was diagnosed with tubulinopathy, TUBB2B mutation, meaning that the microtubules in Rowan's cells do not act normally and so his neurons did not migrate to where they should've done in utero. His mutation is unique to him - he is truly our one in a million!

He also has structural focal epilepsy (due to his brain malformation rather than a chemical imbalance so it can be difficult to control), dysphagia (he aspirates fluids into his lungs), severe global delay, hypotonia, hypermobility in his ankles, cerebral visual impairment (he is registered blind and has little to no vision in his right eye) and sensory processing issues resulting in care issues (we struggle to trim his hair or nails), a self-restricted diet and chronic constipation.

On top of all of this, Rowan's behaviours and mannerisms lead to an autism diagnosis in Summer 2018. He can have challenging behaviour too.

Rowan has many diagnoses and has been through a lot in his short life. But he is overcoming these obstacles to be a happy, smiley, cheeky boy who loves life and is very curious and adventurous. He is thriving at his special school and is adored by the TAs.

Rowan loves Postman Pat, Teletubbies, cake, music, messy play, bouncy castles and hydrotherapy (or 'splashing everyone within 10 metres'!)

He is an incredible little boy and we are very proud of him.


1.Classic Autos by Stoney Creek 65 mustang done in shades of red, has year and name as well as logoStitcher: Jeanne, Texas, USA
In Progress

2.Postman Pat and Trolley, p94 More Storybook Cross-stitch. Postman Pat pushing a trolley containing post and Jess.Stitcher: Karen Burton, Peterborough, UK

3.Postman pat and Jess. More story book cross stitch page 97Stitcher: Rebecca, Kettering, Northants, UK
In Progress

4.Postman Pat The Post Van, ap pattern from a kit by Toadstool Tapestries Postman Pat waving sat with Jess in his vanStitcher: Karen Hockin, Southampton, England
In Progress

5.Postman Pat and Jess His Cat Cross Stitch pattern booklet, from Framecraft Miniatures. Postman Pat driving along in his van, scenery in backgroundStitcher: Sarah, Gosport, Hampshire

6.From The Stitching Land on Etsy Red London BusStitcher: Julie, Anglesey, Wales
In Progress

7.More Storybook Cross-Stitch by Gillian Souter Pat with letters surrounded by border of lettersStitcher: Jan S, Enid, Oklahoma, USA
In Progress

8.1994 Framecraft Minitures Ltd Collecting the Mail - Pat plus Jess on a Post BoxStitcher: EE(Beth)Filmer, Adelaide, Australia

9.Mother bee designs Steam train silhouette will do it in redStitcher: C McDonald, Altrincham, UK

10.Red sports looking car Stitcher: Nicola, Elland, UK
In Progress

11.TV Stitching. Very old magazine Ivor the Engine with Jones SteamStitcher: Mark Grogan, Oldham , UK
In Progress

12.Label Stitcher: Jan G, Hull, UK

Squares received

Cross stitch square for Rowan C's quilt
Stitched by: Jan G
Submitted: Aug 2019

Cross stitch square for Rowan C's quilt
Stitched by: Karen Burton
Submitted: Sep 2019

Cross stitch square for Rowan C's quilt
Stitched by: Sarah
Submitted: Aug 2019

Cross stitch square for Rowan C's quilt
Stitched by: EE(Beth)Filmer
Submitted: Sep 2019

Cross stitch square for Rowan C's quilt
Stitched by: C McDonald
Submitted: Aug 2019


Card for Rowan C
Stitched by: Nisha Chauhan

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