The family of a baby who was born during lockdown and died shortly after his first birthday has paid tribute to their “gorgeous boy”. 

Shortly after Hector Howlett was born, on November 18, 2020, he was diagnosed with a rare disease called Alpers syndrome. 

Occurring in about one in 100,000 people, the progressive, neurodevelopmental syndrome is caused by a double mutation of a gene. 

Eastern Daily Press: Hector Howlett - Picture: EACHHector Howlett - Picture: EACH (Image: Courtesy of family)

For little Hector, this meant he suffered with uncontrollable seizures and a regression of his skills. 

Parents Lee and Tara Howlett, of Great Witchingham, near Reepham, explained how the diagnosis changed their lives forever. 

Mrs Howlett, 36, a lecturer at City College Norwich, said: “Hector was perfectly healthy for the first ten months and hit all his milestones. 

“He’d never shown any signs of being unwell.  

“Then, out of nowhere, he started having seizures. 

Eastern Daily Press: The Howlett family - Picture: EACHThe Howlett family - Picture: EACH (Image: Courtesy of family)

“Nobody knew how to stop them, but he seemed to get better after being intubated and put in intensive care at the Norfolk and Norwich University Hospital.” 

The family was able to return home after but ten days later the seizures started again and he was transported to Great Ormond Street Hospital, London. 

She added: “He was intubated again. We were told he was very sick and may not make it out of the paediatric intensive care unit.

“It was the most horrific time of our lives.”  

Eastern Daily Press: The Howlett family - Picture: EACHThe Howlett family - Picture: EACH (Image: Courtesy of family)

Another week passed before the couple received Hector’s diagnosis. They were told he would be unlikely to survive more than a few months and would lose skills like the ability to smile and swallow. 

“It was incredibly difficult for us to process. 

“Suddenly, we were having to learn how to tube feed, use oxygen machines and a suction machine to manage secretions.

READ MORE: Tribute to baby who died at just 89 days old from 'one in a million' condition

READ MORE: Click here to read more of the EDP's obituaries.

“We also had to administer a cocktail of drugs numerous times a day, all while dealing with the most awful news any parent could hear.

“However, we were very determined to get him home so we could enjoy the time we had left and make sure we created memories as a family.”  

Eastern Daily Press: Hector Howlett - Picture: EACHHector Howlett - Picture: EACH (Image: Courtesy of family)

Hector died on February 8, 2022, aged 15 months. 

“Hector was a fiery little red-head, and we couldn’t have been more smitten with him. 

“There were only two and a half years between him and his big brother, Arthur, so we made the most of the chaos. 

“Arthur talks about his brother every day,” Mrs Howlett said. 

Eastern Daily Press: Hector and Arthur Howlett on a family day out in Cambridge - Picture: EACHHector and Arthur Howlett on a family day out in Cambridge - Picture: EACH (Image: Courtesy of family)

The family was supported by the teams at East Anglia's Children’s Hospice (EACH) and the mitochondrial disease charity The Lily Foundation. 

They have since raised more than £30,000 for worthy causes – including money for their local play park – and have signed up for EACH’s charity Bubble Rush. 

Mr Howlett, a self-employed ground worker, along with Arthur, now aged four, will be among those representing Team Hector at the EACH event in July.  

They will be joined by Mr Howlett’s brother and sister-in-law, Damien Le-May and Victoria Pask, Tommy Le-May, 15, Henry Muskett, 14, and George Muskett, 15.

Eastern Daily Press: Arthur Howlett in his local park with a tribute plaque to his brother, Hector - Picture: EACHArthur Howlett in his local park with a tribute plaque to his brother, Hector - Picture: EACH (Image: Courtesy of family)

Mrs Howlett said: “Our friends and family rallied around us, and we feel very lucky to have had so much support.   

“We’re a strong family and were so determined to keep going for Hector and Arthur.”  

EACH’s foam-filled Norwich Bubble Rush will take place at the Norfolk Showground on July 16 and the course will feature four bubble stations along a 2.5km route. 

Each bubble station has a cannon which pumps out coloured foam to create a four-foot-deep bubble bath. 

Visit https://eastangliaschildrenshospices.enthuse.com/pf/lee-howlett to sponsor Team Hector.

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