'We still have hope' - Father to honour baby girl's memory

Baby Chloe Harrowven was born with the rare and life-limiting genetic condition, Zellweger’s Syndrome

Baby Chloe Harrowven was born with the rare and life-limiting genetic condition, Zellweger’s Syndrome - Credit: Each / Supplied by family

A father whose daughter died just six weeks after being born has vowed to help others after opening up about baby loss. 

Earlier this month, James Harrowven, of Norwich, and his wife Michelle, 30, paid tribute to their baby girl, Chloe. 

Now the 32-year-old is preparing to give back to those who helped his family in their time of need by completing an epic fundraising walk. 

Mr Harrowven is taking on the 83-mile trek from Hunstanton to Hopton on August 5 to raise money for East Anglia’s Children’s Hospices (Each).   

He is supporting the charity as little Chloe, who had an extremely rare, genetic condition called Zellweger’s Syndrome, spent the final week of her life at its facility The Nook, in Framingham Earl.

All three centres run by East Anglia’s Children’s Hospices, including The Nook in Framingham Earl, N

The Nook, East Anglia’s Children’s Hospices centre in Framingham Earl - Credit: Each

The walk is Mr Harrowven’s way of thanking the charity.   

Joined by four friends – Nick Eagle, Sam Willis, Adam Willis and Jack Wenham – the team will camp along the way while walking the full length of the North Norfolk Coastal Path in two days. 

Mr Harrowven said: “We’re so grateful to everyone who has shown their support and donated for this incredible cause already. 

Most Read

“Our target is £7,500, of which £500 will be used to fund a memory bench or tree for Chloe to be located somewhere at The Nook.” 

Chloe was born on August 2 and died on September 13, 2021. 

“Now, at just over five months old, Chloe, would be starting to hit the developmental milestones of rolling, babbling and giggling,” Mr Harrowven added. 

“But my family will never be able to experience the excitement of those milestones because my sweet little girl sadly passed away after just six weeks. 

“When Chloe was born, she didn’t cry, however she was alert looking around the room. After just 30 minutes with our little girl, one of the NICU neonatologists walked into our room very concerned, whisked her away and gave us news we never even thought possible. 

“Chloe needed 100pc ventilation and soon started having seizures.  

“After one week on the neonatal intensive care ward she was diagnosed with a rare, terminal genetic condition called Zellweger’s Syndrome. 

“We were told that with her condition there is no cure and we would possibly have around 12 months together, however most with the condition don’t make it past six months of age.” 

Zellweger spectrum disorder is estimated to occur in 1 in 50,000 births.  It was the first time in a decade the condition had been diagnosed at the Norfolk and Norwich University Hospital. 

The couple, who are also parents to son Alfie, also discovered that they are recessive carriers, meaning they have a one in four chance of this happening with each pregnancy.

“Although we had been grieving for our child and our dreams for her since her diagnosis, the grief of her actually dying was nothing we could imagine.

“I guess through it all – her five-week NICU journey, many tests, seizures, scans and hospital visits – We held out hope that things would be okay. 

“And we still have hope. Hope for changes to the genetic testing criteria, new advancements, and eventually a life-saving treatment for others. 

“The final week of Chloe’s life was spent with the incredible team at East Anglia’s Children’s Hospice and we simply can’t thank them enough for putting us all up so we could spend time together as a family and Alfie could meet his little sister.”