Teen swimmer with rare condition hopes to give back to "kind" hospital team

Wednesday 17 May 2023

A passionate teenage swimmer is hoping to use her long-distance skills to give back to Jersey General Hospital after having to spend six months there due to a recently diagnosed rare genetic condition.

Ocean Brown has been swimming since she was seven years old, and has been a member of Jersey's Long Distance Swimming Club for the last 10 years.

In 2020, she swam the equivalent of the English Channel in a 12ft paddling pool in her back garden in aid of Jersey Hospice Care, raising £2,500.

Now, the 17-year-old is raising money for the Jersey General Hospital after spending four months straight being cared for, after she was diagnosed with a rare condition. 

Pictured: Ocean Brown.

In December, she was taken to A&E. She was continually being sick and had been unable to eat or drink anything for four days. She said: "I couldn't carry on any longer because I was so malnourished." 

She was admitted to hospital, but it was not immediately clear what was wrong. "They didn't know what was going on with me...it took them a while, they had to get a professor in to diagnose me." 

Eventually, it was determined that she was suffering from a condition called Elhers Danlos Syndrome, a rare genetic condition that affects the collagen proteins in the body, or the connective tissue.

"My skin is sort of stretchy, and it means my bones are weaker, my muscles and ligaments are weaker," Ocean explained.

Pictured: Ocean spent four continuous months on hospital being supporting by a feeding tube. 

However, the main cause for concern was that the condition meant she was suffering from a paralysed stomach. As a result, she had to spend four months continuously in hospital, relying on feeing tubes to keep her alive. 

It was only the support of the hospital staff that got her through everything. She said: "They were so kind and gentle towards me... I got on so well with all the nurses and everyone, we had a special bond because I was there for so long and they all knew me." 

And it was just her they were helping get through the long days and nights on the ward: "They supported my family through it all. They would always be there if my mum needed anything, which was amazing, obviously it was a really stressful time for her." 

After long bouts of treatment, the condition is now being managed. She says she is feeling so much better that she has even been able to return to the water.

At the beginning of the month, Ocean went for her first swim since being in hospital.

"It was so good, it was exhilarating... I got this buzz that I'd never felt before because it had just been so long." 

Pictured: Ocean was able to return to the water earlier this months. 

To give back to the staff who got her through her time in hospital, the Long Distance Swimming Club has invited islanders to come and take part in a fundraising sea swim at Archirondel on 21 May. 

GET INVOLVED...

All islanders are invited to get involved in the fundraiser at Archirondel, which is taking place between 09:15 and 09:45.

A cake sale will take place at the swim, raising money specifically for Corbiere Ward, where Ocean spent most of her time.