A 14 year old trying to make a difference…

[Disney Jo]

I am reaching out to you, in the hope that you might give some support by following my 14 year old daughters instagram page she has bravely set up.

Izzy is attempting to spread awareness and show other people what it’s like to be a 14 year old with many special needs and disabilities. She is 1 of only 250 in the world with the rare gene mutation of the CTCF gene and currently under Great Ormond Streets care. She has autism, dyspraxia, dyslexia, hypodontia (missing 24 adult teeth!), severe hyper-mobility, squint, hyperhidrosis (excess sweating of feet and hands), microphelergy - all of these are caused by the gene mutation. The mutation occurred de novo so it starts with Izzy.

It was only discovered in March 2022 at the age of 14. However, Izzy has struggled with all the “uniquenesses” during her whole life.

Due to all her needs she has been bullied, including needing to change secondary schools. Some Dibbers gave some amazing advice at the time, including letting us know about managed moves which we had never heard off.

She is, without doubt, the bravest person I know and I am incredibly proud of Izzy putting herself out there for all to see and hopefully learn from. Thank you for taking the time to read this and if you have the option to click follow on her page, it would be amazing.

Instagram: iamunique_disabilities

She plans to also put some bits on her page about her trips to Florida, what she liked and how she found things.

Thank you.

[dismum]

Followed her -I look forward to seeing her posts

[JoJo88]

Your daughter is inspirational. I've followed her on IG and look forward to seeing her posts

[shona]

Also following

[Hmr89]

What a great idea to raise awareness! Following here now x

[Tillyfloss]

That’s amazing, what a wonderful daughter you have.
I know from personal experience just how much young people can be inspired and helped by their peers.
Well done Izzy ⭐️

[Libby B]

Following! Wow that is a long list of things for her to deal with xx wishing Izzy well and looking forward to seeing her posts

[hipthehippo]

Following! Looking forward to reading her posts. Especially looking forward to her take on Florida - it'll be interesting to read about it from a different point of view - I use an electric wheelchair and although I have less difficulties, it's still very different to when I was fully mobile. You rock, Izzy!

[DonnaD]

I do not use Instagram but will pass this on to my 19 year old daughter. She has complex disabilities like your daughter and was only diagnosed at 14 as well. She also has autism and hypermobility plus alot of other problems. She uses social media to increase awareness too.

[Disney Jo]

Originally Posted by DonnaD

I do not use Instagram but will pass this on to my 19 year old daughter. She has complex disabilities like your daughter and was only diagnosed at 14 as well. She also has autism and hypermobility plus alot of other problems. She uses social media to increase awareness too.

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Your daughter sounds incredible, it is so hard dealing with life generally at times but when you add in the needs it is harder. The fact that she also shares tries to make people aware is fab!