In Loving Memory of Olivia Lucy Elisabeth Wright, Age 4.5

06/02/2021 - 21/08/2025

Gone but never ever forgotten

– Daughter to Steve and Beth Wright

It is with heavy hearts that we share the heartbreaking news of the passing of Olivia a beautiful 4-year-old little girl who brought so much joy and light to everyone who knew her.

As you can imagine, this loss has left her family devastated. During this incredibly difficult time, we would like to come together to support them with the unexpected costs of the funeral and to ease some of the financial burden while they grieve.

Any contribution, no matter the size, will make a difference and will be deeply appreciated by the family. If you are unable to give, please consider sharing this page to help us reach as many people as possible.

Let’s surround Olivia’s family with love, support, and compassion as they navigate this unimaginable loss.

Thank you from the bottom of our hearts.

Written Steve Wright Olivia Dad.

I was once told the worst thing a human can go through in life is dealing with the death of their child. Unfortunately, we have had to go through this experience and can testify that it is accurate following the death of our daughter Olivia.

Olivia was born on February 2021 during the Covid pandemic. A very normal and uneventful birth. Our first child though, so still very exciting for us. After a few weeks she began to lose interest in her feeds and became unwell. She was rushed to Southampton hospital where she deteriorated quickly and eventually stopped breathing. The doctors saved her and got to work on working out what was going wrong. In the following 2 months genetic tests were run and came back with the answer. A very rare genetic condition called ALG6-CDG. Causing malabsorption issues, development delay and a long list of other medical issues.

They hit us with the real blow. She would likely die before age 2.

A central line was fitted, and she would be fed via IV indefinitely as her stomach can’t process any nutrients. In addition, she would go on to suffer with seizures. Oxygen dependent. Poor immune system. Non verbal. Non mobile. Regular stomach issues. Her list of consultants stretched across Basingstoke, Southampton and Great Ormond Street hospitals and would fill a page. Hospital appointments would dominate every week. Beth was forced to leave a career behind and be thrust into a world as a medical parent/carer working 18 hours a day. I continued full time work trying to support where possible.

Age 2 came and went, we sat waiting in terror for the day to come from that point. A few scares from time to time but she always fought and pushed through, showing a determination that not a single other human could match.

Her life was captured in thousands of pictures, videos and experiences which shows smiles and cheeky laughter that would light up a room. Only to be taken away again by a bout of illness where they could disappear for weeks at a time.

On the 13th of August 2025, she became unwell again. The to and from hospital continued for a few days until we began to get very concerned on Friday the 15th. She was admitted again and over the weekend it was confirmed an infection had made it into her central line and had now entered her bloodstream. She was septic and transferred to Southampton paediatric intensive care, ventilated and sedated. Almost a dozen pumps ran day and night with various drugs to try and heal her. The infection had done its damage. Although the infection was now under control, her kidneys had been destroyed and she slipped into kidney failure. Her efforts to fight weakened her and her other organs, especially her heart began to struggle. Stopping at one point.

As parents we were left with few options. Keep her sedated and ventilated when we were advised that she wouldn’t get better and likely experience an unpleasant death via asystole, total kidney failure or pneumonia, or we remove her ventilator, increase the sedation and try to savour our last hours as a family- together.

Doctors commended our bravery in the decision but it didn’t make it any easier. On the evening of Thursday the 21st at 5pm, everything other than sedation was removed and 75 minutes later she took her last breathes in our arms, peacefully and surrounded by love.

Anyone who’s lost a disabled child will tell you it’s a brutal reality. Most support stops. Our car is taken immediately. Key financial support is pulled from the day of death and 8 weeks after everything else follows. Beth will need to find work which will be very difficult whilst grieving and being out of employment for 5 years. Just encase the reality of having to bury our little girl in that time wasn’t enough to deal with.

We remain so grateful for the time we had. The smiles. The laughs. The pure joy she brought to our lives. It outweighed everything bad in between by a long shot.