Our baby has a super rare genetic disorder - the odds are against him but we'll never give up
A Fylde Coast couple are facing an agonising wait to see if their desperately ill baby boy can get through the next stage of his battle for life.
Jody Ollerenshaw and Ash Robinson, both 28, have been told their son Alex’s condition is so rare it affects only around 1 in 5 million people.
He has Cornelia de Lange syndrome, also known as CdLS, a genetic disorder which can affect patients in a number of different physical and cognitive ways.
In Alex’s case, he has only a single ventricle, a rare congenital heart defect that means one of the heart's pumping chambers fails to develop properly, leading to mixed oxygenated and deoxygenated blood circulation and requiring complex surgeries for survival.
The couple, from Fleetwood, have been told that the coming week is crucial, as he has one more chance to attempt to breathe unaided.
If he is able to do so, he will be transferred to a cardiac ward, in readiness for a further life-saving operation, known as the Glenn Procedure, although he is still too tiny to have that procedure at the moment.
However, if he is unable to cope without his breathing tube, the couple have been told he is unlikely to be able to have further treatment.
Alex, who is five months old, is currently in intensive care at Alder Hey Hospital in Liverpool, and the family is staying at the nearby Ronald McDonald House.
Ash has recently been laid off by Fleetwood sales firm BES, so he is able to stay there with Jody and their other son, three-year-old Zachary.
Jody, 27, is keen to raise awareness of the condition and is also urging parents not to be afraid to speak out for their children to give them every chance of getting the help they need.
She said: “Alex has a super rare syndrome, Cornelia de Lange syndrome, and in his case, it is a rare version of a rare condition - we’ve been told he is 1 in 5 million.
“It has been a nightmare journey for us, because of the seriousness of his condition and the way certain things have happened to him before he came to Alder Hey.
“The next week is the big one - Alex has got one last chance to come off his ventilator and show he can breathe for himself.
“We know the odds against him are difficult, but he is such a fighter, he really wants to live.
“Even when he has a coughing fit, he sits up by himself. The doctors have been surprised by him because normally babies who have been sedated just lie back - but he doesn’t.
“He looks at me and follows what I'm doing; he is so aware. He has already survived three open-heart procedures - 30 percent of babies don’t make it. He’s smashed it.”
Alex has already been referred to Brian House children's hospice in Bispham and has been classed as a palliative care patient - the little fighter is up against it.
His parents have been fighting for him all the way and even contacted Great Ormond Street Hospital (GOSH) in London for a reassessment of his chances.
But the couple were told by GOSH that because of Alex’s condition, they would be following the same procedures at Alder Hey.
Jody added: “If we lived in London it might have helped us, we don’t know - they have more specialists in his condition down there.
“I think the NHS is really struggling; it needs more beds and more doctors.
“I would also urge parents to advocate for their children every time - we spoke out about something that happened before he came to Alder Hey. We are fighting now to make sure he gets every single chance to live, whatever is available for him.
“He is fighting every minute, so we’re right there fighting with him.”