Isaac Kearney with his mum Melissa and sister Florence
Isaac Kearney with his mum Melissa and sister Florence
(Image: Andrew Teebay Liverpool Echo)
Isaac Kearney’s mum said she is "devastated" as she opened up on her family's struggles. Over the last few months, six year-old Isaac, from Kirkby, has captured the hearts of Merseyside and people across the world.
Isaac was born with Wolf-Hirschhorn syndrome, a rare genetic disorder, meaning he develops at a slower rate than other children his age. His mum Melissa and dad Alan have tried to highlight the day-to-day realities for Isaac through social media, gathering over one million followers on TikTok alone, with viewers regularly sending their support to him and his family.
Isaac’s love of Liverpool FC has made him a much-loved member of the club’s fanbase too.
Isaac Kearney has been diagnosed with Wolf Hirschhorn Syndrome and severe sleep apnoea
Isaac Kearney has been diagnosed with Wolf Hirschhorn Syndrome and severe sleep apnoea
(Image: Andrew Teebay Liverpool Echo)
He was the star of a video last year that featured Mohamed Salah and Virgil Van Dijk. He has also been a mascot and visited the club's training ground in Kirkby.
But in a post on Instagram yesterday, Melissa revealed there have been further complications to the little boy's health. Doctors at Alder Hey believe Isaac has craniosynostosis, a rare condition where a baby's skull does not grow properly.
She said: “They all wanted to check in on Isaac's progress and have done some assessments on him. During this appointment, we were told that they were 99.9% certain that Isaac also has a condition called craniosynostosis.
“Obviously this was a big shock to us, we had never even heard of it before. After a quick check over we learnt that actually Isaac has no collar bone, which we never even knew.
“He has a large open fontanelle on the top of his head (a soft spot which hasn't closed over), plus other symptoms such as breathing difficulties, dental problems, hearing loss, short stature, global development delay, the list goes on. It's so difficult because a lot of the symptoms also tie in with his Wolf Hirschhorn Syndrome diagnosis, so we just always put it down to this.
“We have been asked to have some blood tests done to confirm the Craniosynostosis diagnosis. However, they said there's no rush for this because they are so certain and because Isaac's has been through so much already, they don't want to put him through any unnecessary stress.
"So next time he is due blood tests this will be added and we will get a diagnosis from it.” Isaac has now been formally diagnosed with severe sleep apnoea too.
This is when your breathing stops and starts while you sleep. Melissa said: “I felt relieved because I just knew, but obviously I was devastated because it's something else for him to cope with.
“The consultant said for Isaac to start on a machine at night time to help him sleep (CPAP). This is what worried me most because Isaac is very sensible and can't cope very well with anything on his skin especially his face.
“But we will receive the correct support from health professionals and unfortunately he has no choice so we just have to go with it... so wish us luck.”
Doctors are also considering full facial/skull reconstruction in the near future. Melissa said: “They say this will help with Isaac's breathing, sleeping, eating etc.
“Not the news I was wanting to hear, but we always knew it would come to this because the skull is so wide open. So now the waiting begins for this to happen.”
Melissa praised the bravery shown by Isaac during this process, as well as the support from his younger sister Florence. She said: “My little Isaac... he rarely complains, so when I see him get upset during any tests or assessments I know just how distressing it is for him because he's usually so brave and just takes it in his stride.
“He is always such a good boy for all of his appointments. This is just the tip of the iceberg we have been dealing with over the last 12 months.
“(Florence) has already taken on the most caring supportive role with her big brother. She thinks she's his big sister rather than his little sister and bosses him around!
“I also think she's starting to understand a little more now that Isaac can't do half as much as she can. But she is so good with him.”
After this emotional update, Melissa praised her followers for their support. She said: “My messages have absolutely blown up.
"I wish I could respond to everyone! But I've got thousands already!
“I'm not doing any of these posts for sympathy. I genuinely just want you all to know how amazing Isaac is and I want to be as real with you all, it's not just our family that has these struggles.
“But we have the platform to raise awareness of what other families are going through and honestly I feel like we have the support of the world behind us right now. I'm getting messages from all over, so thank you all so much.”