Maisie

Age:12
Duplication: (4)(p15.1pter) with deletion (11)(q23.3qter)
Lives in: Bristol, England

Amazing Maisie
In April 2002 our little redhead was born in Bristol, England 8 weeks prematurely, weighing just 2lb 10oz. She was whisked away to the special care unit and it was 3 days until she was well enough to be removed briefly from her incubator for a cuddle. She was diagnosed within 10 days with a rare chromosome disorder duplication (4)(p15.1pter)with deletion(11)(q23.3qter). Nobody could give us any indication of what her future held but we were warned that she would have learning difficulties and would probably never walk or talk. She was our first born and we were totally crushed but had already fallen so deeply in love with Maisie that at all we cared about was getting her well enough to come home. Thankfully Maisie fought hard to stay alive and after 2 blood and 2 platelet transfusions, feet castings, MRI scans, major open heart surgery and a ridiculous amount of drugs she finally came home on 16 June that year. Adapting to her surroundings was hard for Maisie with poor vision, low muscle tone and slow development. It was hard for us too, watching her struggle to breathe, to feed, to hold up her head up. Slowly, very slowly though she started to make progress and our patience was rewarded after 6 months with her first proper giggle. That is a sound I never tire of hearing.

 Zealous physiotherapists, OTs and care workers began to come into our lives and home and helped us to learn how to care for Maisie. But it was Maisie's own Incredible determination that kept her on the go. She was desperate to move and Never gave up trying to figure out a way to get around. Finally she managed to learn how to crawl, well her own style of crawl at least at the age of 4. She still amazes and humbles us how hard she works to achieve things that we take so very much for granted. 
By school age we had come to accept that Maisie had profound and multiple learning difficulties and we secured a place at a Special School where she still is and loves. School has helped Maisie to Grow into a confident and in her own way, sociable young lady. She loves being Included in everything at school and out of school and thoroughly enjoys getting stuck into activities. 
Sadly Maisie has never learned to walk independently. She tries so hard and came close a couple of times but her poor sense of balance, low muscle tone and scoliosis of the spine have prevented this from becoming a reality for her. However, It doesn’t stop her from having a go at everything and I truly admire her Adventurous attitude. She embraces every day and revels in physical activities such as horse riding, swimming, trampolining...she has even had a go at abseiling and a zip wire!

Maisie never managed to talk either partly due to physical difficulties and partly cognitive, but she Interacts with us in her own special way. She uses a tablet with symbols, facial gestures and vocalizations to make her needs met but it can be quite crude and often frustrates her (and us) at those times we don't get it right. 
6 years ago, after years of trying we were finally able to give Maisie a Sister and complete our little family. Lily had a huge impact on all of our lives. She provided a new dimension of play and social engagement for Maisie and they now have an incredible, unbreakable bond. Lily finds her own creative ways to engage with her sister who rewards her with a secret smile she keeps only for her. For us, Lily provided the impetus to look outside the world of disability that we had grown accustomed to and she helped to 'normalize' our family dynamics. Although its hard sometimes to ensure that we give each of our girls equal attention and nurture on the whole I think they both hugely benefit from having each other in their lives.

Its strange thinking back about all the problems Maisie has had over the years. We had years of poor sleep, reflux issues, constipation, recurring chest and ear infections, glue ear, dental surgeries, eye surgeries, heart monitoring to name a few. But Maisie has coped so well and taken each problem in her stride and generally comes out the other side stronger and more determined than the last. Currently she has severe scoliosis and undoubtedly will eventually need invasive surgery to correct this which is not something any of us are looking forward to but even that I am confident Maisie will find a way to smile through. 

Every day we face new challenges and we worry like all parents about the future but mostly we thank the stars for our amazing Maisie.