When Amanda Cordell’s son Samuel was born 19 years ago, he slept peacefully through the first night of his life.

It was the last time he was to enjoy that simple luxury.

The signs that something was wrong with Samuel were there from the first few days of his life.

Amanda, from Wivenhoe, said: "Samuel always seemed uncomfortable, a fussy eater who vomited up my breast milk and never settled at night.

"He developed cradle cap and then eczema which become infected so badly that he had to be admitted to our local hospital."

In hospital Samuel caught Rotavirus and was placed on a special feed but even when he was well enough to be discharged, he still suffered constant vomiting and bowel issues.

"We hardly slept for months," remembers Amanda.

"We would take it in turns to walk up and down with him all night whilst he cried or was sick.

"We were new parents, so it was sometimes hard to know what was normal and our GP and the local hospital seemed to have little idea on how to help us.

"David and I were convinced however, that there was a connection between his bowel issues, eczema and vomiting."

At seven months, Samuel was referred to a paediatric gastroenterologist who diagnosed him with eosinophilic gastrointestinal disease as the cause of his relentless symptoms.

"We didn’t know it then, but we were at the start of a very long, tough journey," says Amanda.

Samuel was placed on a highly restrictive diet with elemental feed and Amanda started to search for information that might help her and David to support their son.

Whilst there was virtually no information on the condition in the UK and Europe, Amanda learned about the work being carried out into gut allergies and eosinophilic disorders at the Cincinnati Children’s Hospital.

In 2005 she and her husband David attended a conference when, for the first time, they realised the value of having a support group.

"It was such as relief to be in an environment where people understood what you were going through but also where there was hope for the future.

"I came back to the UK and started up an online UK support group and things just went from there.

‘We quickly discovered that there was a whole raft of people, often with very poorly children who were simply desperate for help.

"On the clinical side there was clearly a huge knowledge gap and a lack of consensus on how to treat these patients."

Their daughter Heather born in 2007 was also to develop gut problems, eczema and immediate allergies.

“It was devasting to hear our daughter also be given an eosinophilic diagnosis," said Amanda.

Amnda spent the next few years raising funds and with the support of other families affected by eosinophilic diseases in 2010 we registered a charity.

She added: "Sadly, in December 2013, Samuel became seriously ill and I was forced to a back seat from the charity for a few years, but in the meantime the need for research, diagnosis consensus and treatments became even greater.

"I went back to Cincinnati for the 2017 CURED conference and was completely humbled by the great work that the researchers and patient advocates had done in driving forward awareness and change in the USA.

"The meeting had attendees and presenters from around the globe, including the UK’s Professor Stephen Attwood who first identified eosinophilic oesophagitis.

"I came back inspired with the aim of bringing together the global expertise to improve disease awareness, access to medical care and patient support for all those suffering with eosinophilic diseases."

The charity was relaunched in 2020 as the EOS Network, now supported by a medical and scientific board.

The change in constitution provided two arms, one a community hub for patients and their families and the other a global network for HCPs.

Amanda explained: "There is a real need to expand our reach, to more patients their families and HCPs.

"Internationally it is still difficult for people to get in front of an HCP who understands EOS diseases which can result in an average 8 year delay in diagnosis for our adult community and 3 years for a child.”

EOS Network’s mission is to ensure that every person with an Eosinophilic Gastrointestinal Disease receives a prompt accurate diagnosis, the right treatment for them, and support to live with their condition.

As a voluntary organisation they advocate for patients needs in medical associations.

EOS networks communities experience was presented to NICE when reviewing the application for what it now the first recommended NHS treatment for Eosinophilic Oesophagitis EoE.

They have recently launched an awareness campaign informing GP’s, A & E and supplying patients’ support resources to hospitals around the country.

"The last 2 years have been a huge success but there is still a lot of work to be done,” says Amanda.

“As a volunteer led charity that has grown 50 per cent year on year we need to raise the funds to support its increasing demand which has reached 5,000 new visitors a month to our website and nearly 1,000 registered community members.”

“Our vision is that one day everyone with an eosinophilic gastrointestinal disease can eat without pain."

For more information, to get involved or make a donation, visit eosnetwork.org or email contactus@eosnetwork.org.