Family F

M* is 10. Just before her first birthday, she was diagnosed with a rare chromosome disorder (inverted duplication deletion 8p). M* has complex physical and medical needs but that doesn’t define her.

When well, M* is a happy, sociable person that loves been out. We decided on the 13th March to self isolate M* as she was due surgery the following week but the day before lockdown her spinal surgery was cancelled. I had mixed emotions about it been cancelled as we have been waiting nearly 3 years. I am glad she’s safe at home but sad that her posture is deteriorating and we don’t know when the surgery will now go ahead. We received M*’s shielding letter on the 11th April even though I knew M* was vulnerable and that’s why we made the decision to self isolate the letter made me feel sick.
We have been lucky that we can protect her as her dad is working from home and her sister wouldn’t do anything to risk M*’s health.
We have been trying to keep busy and not watch the news.
We have done a number of sensory activities during lockdown and spent some lovely family days together. Afternoon tea was my favourite.
M* is using her standing frame (in the pictures) which she really enjoys as it gives her a change of position. (A standing frame has a number of beneficial outcomes)

#Lockdown #SEND #PMLD #Shielding

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