UCD 2021 – Natasha’s story

Hi my name is Natasha, I live in Lincolnshire with my family – my husband Justin, my son Thomas (11) and my daughter Elizabeth (seven).

Both of my children have the exact same deletion on chromosome 12 – 12q24.33. Despite this they both have their own unique personalities and issues. Thomas has a diagnosis of Tourette’s syndrome, Meares-Irlen Syndrome, dyslexia and autism. He loves Mickey Mouse, Marvel, Lego and magic. He has a talent for performing and public speaking and is a real people pleaser. He likes to follow rules and dislikes loud noises. He is very helpful (especially at school) and caring.

Elizabeth has a diagnosis of autism, with a pathological demand avoidance profile, hypermobility syndrome, microcephaly and global developmental delay. She loves her rabbit, Thumper, packing and unpacking bags, babies (dolls and real) and dancing. She is non-verbal but makes up for it with her expressive face. You can’t help but smile when Elizabeth is around as she is so comical. Elizabeth was tested first for a genetic condition and as the deletion they share is of an unknown variant she is leading the way with further in-depth genetic testing.

We have been members of SWAN UK for the past two years in which time we met other parents during a trip to Twin Lakes. We all got so much from this trip, both children and adults. For me it was great talking to other parents in similar situations to us and knowing that we are not alone in all the things we go through.

Last year Thomas raised money for SWAN UK by letting his sister shave his hair (with a little help from me)!

Both of our children are in mainstream school and we are awaiting a placement for Elizabeth but there are no places in our area at the moment. Even though she should be in year two she has been kept in reception for three years as this is the best place for her in mainstream school. Elizabeth has just correctly learnt to say and motion ‘up’ and ‘down. ‘She can also now independently trace around her name which are both amazing achievements.

Thomas is now in Secondary School and has said how much happier he feels as his teachers and teaching assistants understand him more and know how to work with him to learn better than he ever could at primary school. This has been evident by all the awards and praise he has got in such a short amount of time. He was the first ever student in the whole school to achieve the diamond award for behaviour and attitude to learning!

Join our Community Of Families