A BRADFORD mum has spoken for the first time since her son sadly died after developing a rare life-threatening neurological condition. 

After suffering involuntary muscle spasms and seizures, Isaac Redgrave was not diagnosed with status dystonicus until September 2019 when aged 10.

Children with cerebral palsy are most likely to develop the condition which involves sustained muscle spasms leading to abnormal posture and movements. 

Isaac sadly died aged 11 as a consequence of his conditions.

Isaac was not diagnosed with status dystonicus until aged 10.Isaac was not diagnosed with status dystonicus until aged 10. (Image: Irwin Mitchell) Mum 42-year-old Lizzie Redgrave, of Clayton, is using World Cerebral Palsy Day on Sunday to speak for the first time about her family’s loss and of the need for greater understanding of status dystonicus.

She said: “Isaac means the world to us. We are so proud he was our son and it breaks our hearts that he’s no longer part of our family. 

“All we wanted was to help him and sometimes it felt we were powerless to do so because of his condition.

“I can’t thank all the specialists who diagnosed Isaac’s status dystonicus for everything they did for him and our family. 

“Whilst it appears that there is a slowly growing understanding of status dystonicus in the medical profession, it very much remains something that isn’t well recognised.

“I don’t blame the medical professionals for not diagnosing Isaac earlier, I just don’t think that they were aware of status dystonicus.

"I just hope that by sharing our story we can help other families. This has got to be Isaac’s legacy.”

Isaac sadly died aged 11 as a consequence of his conditions. Isaac sadly died aged 11 as a consequence of his conditions. (Image: Irwin Mitchell) Isaac was born in a poor condition in July 2009. He was deep purple and had to be resuscitated.

It was around 10 minutes before he breathed on his own and he subsequently suffered from seizures.

Isaac was diagnosed with dyskinetic cerebral palsy, affecting all his limbs, aged about five months.

Later in his life, he would often be taken to hospital after suffering seizure type symptoms.

It was only after he was referred to specialists at Leeds Teaching Hospitals NHS Trust that he was diagnosed with status dystonicus in September 2019. 

Unfortunately, Isaac later developed sepsis and sadly died in March 2021.

Lizzie who together with husband Phil, have another two children, Toby, aged 11, and Luca, aged three, said: “There was no rhyme or reason to his seizures or when and where they would happen.

"It was so harrowing. He would go grey; you would see the terror in his eyes and him pleading ‘help me mummy’. 

“He would retch and vomit until blood came out of his mouth. He wouldn’t stop and it was like he was running a marathon with someone with a gun behind, chasing him.

“He did this throughout his life and it became worse around the time of puberty when the episodes lasted much longer."