A teenager was diagnosed with a life-changing condition after his parents noticed something 'wasn't right' when he was a baby.
Alfie Lund from Burscough was diagnosed with MECP2 duplication syndrome at the age of four and was only the seventh person in the UK to have the life-changing condition at the time.
His parents said they became concerned when Alfie was not able to walk or talk and did not sit up unaided until he was 14 months old. The MECP2 is now thought to affect less than 40 people in the UK.
READ MORE: Hunt for yob with YNWA tattoo who went on drug fuelled birthday scooter chase
Alife who is now 14 isn't expected to live past the age of 25. Speaking to Lancs Live his parents described Alfie as the ‘most happy, smiley little boy’.
His mum Rachel said: "He’s affected in every way, so he’s not able to walk or talk, and he’s got profound multiple learning difficulties. He can’t do anything at all for himself, whether that’s washing, dressing, feeding, all those things have to be done for him and he has multiple complex seizures; he’s regularly admitted to hospital with infections, pneumonia and sepsis, which is where we are at the moment, and we’re going into week five in Alder Hey Hospital."
Speaking on the challenges as a parent, she said: “You’re left in a bit of limbo as your child’s got this condition and you don’t know what the future holds. We do know that quite a number of children don’t live beyond 20 to 25, so it’s tough, there’s no doubt about that.
“He’s the most happy, smiley little boy, when he is well, and he has a lovely bond with his older brother, Cameron, and when Cameron walks in the room, Alfie’s face just lights up. If he’s ever been away, for a day, he asks how's Alfie, and he goes straight to him and gives him a hug and a kiss.”
Alfie is among one of 54 children in the North West of England living with a critical condition being helped by the children’s charity ‘Make-a-Wish UK,’ which helps to grant wishes to children and young people fighting life-threatening conditions. And the 14 year old received an outpouring of support online from indie rock bands after the charity appealed for help in granting his wish for an ‘indie rock party.’
Mum Rachel is a trained pharmacy technician who is caring for Alfie full time at the moment, and Alfie’s dad Mark, 51, is a machine operator. Rachel added: “Alfie’s birthday is in January but, because his condition makes him very susceptible to chest infections in winter, he's never had a proper birthday party, so to have a big party with indie rock music, surrounded by people he loves, would mean the world to Alfie and make up for all the birthday parties he’s missed.
‘It’s a rare, genetic, progressive neurological condition; it affects him in every way. He can’t walk or talk, he has multiple complex seizures, and he’s been hospitalised more times than I can remember. Music is one of the most important things in Alfie’s life – he's quite the indie rocker and likes bands like Arctic Monkeys and Oasis and it makes him move about and get excited.’
Alfie’s family are now appealing for public support for Make-A-Wish UK, encouraging anyone who is able to donate to the charity. With another 449 wishes waiting across the rest of the UK, Make-A-Wish UK hopes to raise a total of £1.25million by the charity’s national event, World Wish Day which encourages people to donate on April 29.
‘His wish will be an amazing experience, which he really deserves after all he’s been through,’ said Rachel. ‘Whenever I’m struggling, I look at Alfie and think, "Well, if he can get on with it and smile, then so can I.’’
To donate to Make-A-Wish UK and help grant a wish for children like Alfie, in the North West and beyond, click here.
