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Here are some suggested organisations that offer expert advice on special needs.

2 year old with rare brain condtion and dla.

2 replies

Harleyfreya · 27/10/2023 13:23

Hello, first time posting on mumsnet, my daughter has recently been diagnosed with a rare brain condtion called Cerebellar hypoplasia, via mri, diagnosed at 2, and took a whole year for the diagnoses and waiting on appoiments ect. Symptoms was not being able to sit at 1, couldn't crawl untill nearly 2 and cannot walk or stand at all and been told she may never do so, the part of her brain is smaller that controls mobility and speech. Still awaiting genetic testing to find the cause and appoiments such as what support she'll get and need ect

She cannot walk or stand unaided at all, I have a 6 month old baby, so day to day can be a struggle. I wondered if there's any help out there? Is she to young for dla being only 2 and mobility isn't awarded untill 3? This I'd a life long disability, she also is being tested for autism on top of this. Tia x

OP posts:
YellowRosesWithRedTips · 27/10/2023 14:32

DD isn’t too young for DLA, but will only be awarded to care component now. Use the Cerebra guide to help you complete the form. If you need a vehicle and you have a low income you could look at family fund. They offer lease vehicles to some families with DC under 3.

Separately to DLA you might want to look at some of the below:
-An EHCP - you can request an EHCNA. On their website, IPSEA has a model letter you can use. Does DD already attend nursery?
-Social care assessments - a carer’s assessment for you and an assessment via the disabled children’s team for DD.
-A home OT assessment - to look at any equipment, aids, adaptations DD needs, including a disabled facilities grant if necessary.
-A referral to wheelchair services - if DD needs a specialist buggy or a standard buggy but with specialist seating/adaptations.
-Home Start - can sometimes support families with DC under 5.
-Blue Badge - depending on DD’s needs and your area you may need to wait until 3.

Has DD been seen by SALT and OT?

Harleyfreya · 27/10/2023 18:08

Thank you so much, this is really useful information, I'm going to look into above, we haven't been in contact with anyone/ vice verser, her health visitor has sent refferal off for speech therapy, we have an appoiment with community paediatric Tuesday, has an app on April 2024 with neurologist, and awaiting genetic results, so maybe after the appointment Tuesday, I can get things moving. Thanks again very helpful

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