Now at just over five months old, my daughter, Chloe, would be starting to hit the developmental milestones of rolling, babbling and giggling. But my family will never be able to experience the excitement of those milestones because my sweet little girl sadly passed away after just 6 weeks on September 13th 2021.

When Chloe was born on the 2nd August, she didn’t cry, however 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 but would change our lives forever.

Chloe needed 100% 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. The last diagnosed case in the hospital was over 10 years ago.

Zellweger’s is a peroxisomal disorder involving the creation and function of peroxisomes, which are needed for the body to function properly. Peroxisomes are part of a cell impacting every system in the body, including breaking down fatty acids and producing lipids that are vital to the nervous system, digestion and the brain. We were told that with her condition their is no cure and we would possibly have around 12 months together however most with the condition don’t make it past 6 months of age.

Although my wife and I (and frankly, still are) shocked with the diagnosis, the odds of it happening were unfathomable. Zellweger spectrum disorder is estimated to occur in 1 in 50,000 live births and there are less than 500 children living worldwide with a peroxisome biogenesis disorder. To make matters even worse, we learned both my wife and I are recessive carriers, meaning we have a 1 in 4 chance of this happening with each pregnancy.

We already had our son Alfie who as far as we are aware to this day is fit and healthy and we very quickly went from being proud new and excited parents with a little sister for Alfie to new parents of a terminally ill, special needs child to then grieving the loss of our 2nd child. We were terrified and excited as each day passed to spend time with Chloe and watch her get bigger but each day was also shadowed by our fear of what the future holds, knowing that each passing day was one day closer to when Chloe would inevitably leave us.

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 5 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 other kids with a peroxisome disorder.

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. 

We originally went to the children’s hospice for step down care from NICU so we could get used to everything / get everything set up for home ie oxygen, medical supplies delivered etc. We got to the hospice on the Monday and they had everything ready for us to leave for home that weekend, however on the Friday Chloe took a turn for the worse & had an episode where she stopped breathing for a period of time and she sadly deteriorated over the next few days. 

The care and support they gave us all was incredible and beyond anything we could of ever wished for, although we unfortunately didn’t make it home with Chloe we are ultimately so happy that she got to spend her final days with both her mum and dad by her side and in the care of this amazing charity.

I’m aiming to raise £7,500, it costs a staggering £7,000 to run the Nook each day, this would mean we could run the Hospice for a day in Chloe’s memory and the remaining funds would go towards either a tree or a bench to be positioned in the upcoming garden works at the hospice (The Nook - Framingham Earl) in which we stayed.

East Anglia's Children's Hospices (EACH) supports families and cares for children and young people with life-threatening conditions across Cambridgeshire, Essex, Norfolk and Suffolk. Their care and support is tailored for the needs of all family members and delivered where the families wish - in their own home, at hospital, in the community or at one of three hospices in Ipswich, Milton and Framingham Earl. They deliver a wide range of services through short-break care, emotional & psychological support, symptom management, care at end of life, bereavement support and many activities & therapies.

For both families accessing care, and those who have been bereaved, EACH is a lifeline at an unimaginably difficult time. They rely on voluntary donations for the majority of their income.

On the 5th of August myself along with 4 friends - Nick Eagle, Sam Willis, Adam Willis and Jack Wenham will begin the 83 mile walk along the full length of the Norfolk coast from Hunstanton to Hopton. Camping when we need to and aim to complete this over 2 days.

Please show your support and donate for an incredible cause.