A local mum is trying to spread awareness of a disease that has left her daughter trapped in her own body.  

Donna Hunt, 56, lives in Spixworth with her husband, Darren Hunt, 54, son Jordan, 29 and daughter Danni, 26.  

The Hunts are a normal family. They have a dog, they enjoy family time and go on walks, but everything changed when Danni was five years old and diagnosed with a rare disease called Rett Syndrome.  

Norwich Evening News: Danni Hunt, 26 suffers with seizures and hyperventilating Danni Hunt, 26 suffers with seizures and hyperventilating (Image: Donna Hunt)

Donna said: “When she was little, she would babble and say the odd word here and there, but we did start to notice some odd symptoms.  

“At first, we were told it was some sort of global delay, and later they suspected autism as she displayed lots of the same symptoms.  

“When a paediatrician said she wanted to talk to us when Danni was five, we instantly feared the worst, but she said it was something called Rett Syndrome – I had never heard of it. 

"It’s rare and for the most part unknown, even now I am still learning.” 

Norwich Evening News: Danni Hunt was diagnosed with Rett when she was just five years old Danni Hunt was diagnosed with Rett when she was just five years old (Image: Donna Hunt)

READ MORE: 'My baby died so I could live - now I must survive to honour her'

According to the NHS, Rett Syndrome is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability. 

Symptoms can include seizures, irregular breathing patterns, irritability, unsteadiness and awkwardness when walking and loss of ability to use hands purposely – including other symptoms.  

Danni is a happy girl, she loves nothing more than watching the Toy Story and Shrek films, her mum said each time she watches them, it is as though she is watching them for the first time – but it isn’t always this easy for the family.  

Donna said: “She is non-verbal and so will sometimes display what looks like behavioural problems, but it’s usually because she is unable to communicate, but people look at her like she is naughty.

"It’s so hard to get understanding when it is an invisible disability.

“She will sit in a conversation, she is there and actively listening, but she cannot join in – I think it must be horrible to be almost trapped in your body during social times. 

Norwich Evening News: Danni's older brother Jordan has a good bond with his sister, including watching the football with her while she sips a beer as they support their team Leeds United Danni's older brother Jordan has a good bond with his sister, including watching the football with her while she sips a beer as they support their team Leeds United (Image: Donna Hunt)

READ MORE: Family and friends brave firewalk in memory of estate agent's cancer battle

“She also started off with seizures which turned into epilepsy, which she still has now, but particularly her brother Jordan is brilliant at dealing with these moments, he is not scared at all and just gets on with it.  

“Another symptom of Rett which Danni displays is hyperventilating, she holds her breath and then will start hyperventilating, she does this quite often and it’s really common among people who have the disease.” 

Danni has lots of symptoms, some affect her more than others, but her family help her to medicate and manage where she needs to.  

Norwich Evening News: Her family have taken part in lots of fundraise to help fund the cure Her family have taken part in lots of fundraise to help fund the cure (Image: Donna Hunt)

READ MORE: Amputee prepares for freezing temperatures and physical challenge of mountain climb

A difficult time for Danni was during the pandemic. As someone at risk, she spent three years indoors and this caused her and Donna great anxiety.  

But slowly and surely, they have been venturing outside. 

Danni has been attending the Sprowston Hub as she loves socialising, and they have been going out for family walks as and when they can.  

A new drug has been tested in Canada for the cure of Rett - and it has given the family hope.

Donna said: “I have been following the cure for a few years. They’ve just tested on the first girl and her symptoms have been greatly improved.  

Norwich Evening News: In September they will start their challenge along the Norfolk coastal path In September they will start their challenge along the Norfolk coastal path (Image: Donna Hunt)

DONATE: Donna's fundraiser for Reverse Rett

“We are focusing on this, and on giving her the best life we possibly can.”  

Reverse Rett is a patient advocacy and research organisation focused on delivering treatments and a cure for the syndrome. 

Donna and many people affected by the disease are walking the coastal path from Hunstanton to Wells next month in aid of the charity. You can support her at JustGiving.com.