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LoveQuiltsUK - Lexi T's quilt

Lexi T's quilt    (Quilt Closed)

Born:December 2004
Illness: Schuurs-Hoeijmakers syndrome (PACS1)

Theme: Minnie Mouse

Date opened: 8th Dec 2018
Date closed: 18th Dec 2018
Deadline: 26th Apr 2019

Photo of Lexi T

Theme details

Minnie Mouse - A flamingo on the label if possible

Child Interests

Lexi adores minnie mouse & anything pink. Pink flamingos are also a hit at the minute ;)


Lexi was born by Em.c-section after a routine appointment discovered she had a rapidly reduced heart rate, we were told how incredibly lucky we were to have been there at that time as it could have been a different ending. She was always a very unsettled baby, didn't like to be held or touched, she seemed to just cry for the 1st year of her life. We met many different Drs who could not find anything wrong with her for a long time, we were told she had GDD for alot of years. Lexi struggled with a lot of everyday life, she didn't cope very well when starting in nursery. It gradually became clear that as long as her everyday routine was the same we managed fine so our whole life then became a giant calendar with everything noted down in the order it would be happening in.
When lexi was almost 12 we finally recieved the call we had been waiting for. The DDD Study had found the answer to all of Lexi's difficulties! We were so excited to finally have some answers.... only when we met the Geneticist we really didn't have answers, we just had a name. Lexi shares her syndrome with only 87 other children IN THE WORLD. We are 1 of only 12 in the UK. So, instead of answers we got a "family" with whom we can share our successes & concerns, we can see how the older children are developing & offer encouragement & advice to the parents of younger children. There is very little information on how Lexi will be as an adult, no life expectancy can be given as we have no comparison. So we live very much for now! Every achievement, every new goal we reach, is celebrated & shared with our new PACS1 family.
Lexi is now almost 14 & is very much still reliant on her routine boards. She is the happiest, grumpiest, smiliest teenager I know. She amazes us everyday with her resilience & attitude. Although she is still very much dependent on other people for help with personal care & danger awareness etc she just smiles & carries on! She loves her baby sister, Aubrie. She likes to go out walking in the nature reserves with our family. She LOVES school!
She really is my little superstar!!


1.LQ files Minnie Mouse in a flower by AbigailStitcher: Val Gilbert, Coningsby , UK
In Progress

2.Disney a punto Croce High kicking keep fit Minnie, possibly without starStitcher: Sandra, Shefford, England

3.Mickey Unlimited - Ultimate Cross Stitch Collection Minnie with yellow pocket book and pink dress - will not include Mickey - pattern is called Photo ShootStitcher: Jeanne, Texas, USA
In Progress

4.Princess Minnie from LQ filesStitcher: Jan , Lincs, UK

5.Disney punto croce magazine number 93 Minnie Mouse sitting on the floor wearing a pink dress.Stitcher: Karen Hockin, Southampton, England
In Progress

6.Minnie mouse as a fairy from filesStitcher: Gail, Lochgelly, Scotland
In Progress

7.Minnie dressed as a cowgirl from Disney Point de Croix facile 58Stitcher: Michele, Derby, Connecticut , USA
In Progress

8.Shortened Minnie mouse sampler Mickey collection, Disney home ultimate collection leisure arts. p36Stitcher: Roisin, Amersham, England
In Progress

9.Disney a punto Croce no 84 Minnie Mouse wearing a red and white polka dot dress jumping in the air Stitcher: Paula Dewar, Glasgow, Scotland
In Progress

10.Minnie Mouse in her pyjamas carrying a teddy bearStitcher: Jennifer Urquhart, Glasgow, Scotland
In Progress

11.From LQ files Minnie DressStitcher: Julie, Anglesey, Wales
In Progress

12.Label Stitcher: Louise B, Surrey, UK
In Progress

Squares received

Cross stitch square for Lexi T's quilt
Stitched by: Sandra
Submitted: Jan 2019

Cross stitch square for Lexi T's quilt
Stitched by: Jan
Submitted: Jan 2019

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