JESS Wright has shared an emotional post revealing her son Presley has been diagnosed with a rare condition.
The former Towie star, 38, shares Presley, two, with husband William Lee-Kemp.
She took to Instagram to share that her little boy has got “a congenital heart disease called ‘Bicuspid Aortic Valve'”.
Jess said: “Something he was born with & happens to a small 1% of us. Essentially, instead of having three leaflets in his aortic valve, like most, he only has two.
“This condition affects how blood flows from the heart to the rest of the body and will require monitoring & care over time.
“I won’t go into the full details right now, but while this is please God not a fatal disease, we are coming to terms with the fact that our son will need intervention at least twice in his life.
“By intervention I mean open heart surgery. Saying those words out loud physically hurts my soul.”
The star continued: “We know that Presley is strong and resilient.
“With the help of modern day medicine, Presley will live as normal life as the next child, we hope & pray.
“I also know that this platform will help me share & get information, express my feelings, find answers to questions, & provide much-needed support and knowledge to others in need.
“I would love to hear from any other parents who are navigating this unknown & very scary territory, as knowledge is power & it is a comfort to know that we are not alone.”
Jess told her followers she will be fundraising for Brompton Fountain children’s charity in the future.
Dozens wrote back to the star and one shared: “Hi Jess my son was diagnosed with the same, I never knew until a week after I had him with my other two children being fit & healthy it was a huge shock too the system.
“At four weeks old he got an operation to stretch the valve and from then he’s been doing incredible. He’ll be 14 months next week and praying he will not have to get open heart surgery any time soon.”
Another said: “My son has aortic stenosis and a bicuspid aortic valve, he’s 11 and thriving we have needed no intervention as yet.
“As he has got older there’s been a slight improvement which keeps him stable and could do for decades.
“Many people don’t find out until they are in their 50s at least.
“It’s really scary initially and can limit certain careers, but they can and will have a very full life xxx”