Mim is a lovely little girl with a very rare genetic condition (a GRIN1 gene mutation) that causes her global developmental delay, cortical visual impairment and very low muscle tone. At 3 years old she cannot sit or walk on her own, and she is getting too long and heavy for us to safely carry her upstairs. So we’re working to create a downstairs bedroom and wetroom for her, but this is a big challenge for us.
Mim really needs these adaptations to create the space to meet all her needs and make our home more accessible for her. We’re planning to rip out our kitchen to turn it into Mim’s bedroom, and turn our utility room into a special wetroom for her, with a ceiling hoist running between the two rooms. We’re also building a single-storey extension to fit a new wheelchair-accessible kitchen-diner, with a large back door and ramp for easily getting Mim into & out of the house. We’ve got great plans for installing sensory equipment and appropriate storage for all her physiotherapy equipment & medical supplies, and you can read more about our plans on our blog, http://www.perfectinweakness.co.uk/more-room-for-mim/.
The Council will help with the cost of these adaptations, but their grant covers less than half the total needed, and we simply cannot afford the difference. We’re doing everything we can including applying to charities & trusts, but we still need lots of help. We’re planning to do a sponsored swim with Mim, swimming 300 metres with her – one metre per £100 that we’re hoping to raise. Although Mim cannot walk or swim on her own, she really loves being in the water, and we will be swimming with her to help her cover the distance. This is a big challenge for Mim as her low muscle tone and sensory processing problems mean she tires quickly in the pool. But we’re confident that with a little help she can reach this goal and take part in her own fundraising. If you'd like to find out more or you're interested in sponsoring her, please visit https://www.justgiving.com/fundraising/moreroomformim
Mim is a beautiful little girl who has a very rare ‘GRIN1’ gene mutation, which affects the ‘neuroplasticity’ of her brain, making it harder for her to learn and acquire new skills.
The diagnosis is a pretty good fit for Mim’s symptoms, explaining her poor vision and dystonic movements, although we’re very fortunate she doesn’t suffer from epilepsy.
The condition was only discovered in 2011, so we’re told that Mim is one of maybe 7 or 8 children in the world currently diagnosed with it – making her truly one in a billion.