When Mark and Rachel Lund’s son Alfie was diagnosed with an incredibly rare, life-shortening condition, they were devastated.
Aasma Day talks to them about their story, and why they have set themselves a record-breaking challenge to create the world’s largest chain of football related items to raise the profile of Alfie’s syndrome.
“Don’t worry – he’ll catch up and be fine.”
These were the words Mark and Rachel Lund clung to with hope, despite the worries at the back of their minds that something was not quite right with their second son, Alfie.
The couple, who live in Burscough, near Preston, already had a son Cameron, now 11, when Alfie was born, so they knew that Alfie was not developing in the way he should.
Alfie, who is now six, was born on January 8, 2008, and at first, there were no indications that there was anything wrong, as the pregnancy went smoothly and he seemed fine at birth.
Mum Rachel, 34, who is a pharmacy technician at Morrisons in Ormskirk, recalls: “Alarm bells started ringing with us from when Alfie was about six weeks old.
“Alfie was not meeting the milestones you would expect in a child his age, and we both thought he was quite slow in his progress.
“Alfie was late to smile he wasn’t trying to sit up or roll over and he did not like any sort of tummy time. Sometimes, we would prop him up and there would be no balance.
“We just had an inkling that something was not quite right.”
Whenever Mark and Rachel voiced their concerns about Alfie to others, they were reassured that he was probably just a bit slower to develop and would soon catch up.
Desperate to believe this, the couple hoped everything would be okay.
However, when Alfie went for his six to nine-month developmental check, they raised their worries.
The one thing that they found particularly alarming was Alfie’s reluctance to make eye contact and, at first, they worried there might be an issue with his sight.
Rachel remembers: “At this point, Alfie was almost newborn-like. He slept for most of the day and he did not want to make eye contact with others at all.
“Alfie also didn’t respond to noise in the way you would expect. He failed his hearing test when he was born, and was admitted to hospital when he was six weeks old with a perforated ear drum.
“In the first six months of his life, Alfie was constantly snotty and sickly, and struggled with constipation.”
After Mark and Rachel flagged up their concerns at Alfie’s development check-up, he was referred to see an ophthalmologist at the hospital. When he went for his appointment he was 13 months old, but specialists could not find anything.
Alfie was then transferred to have an MRI scan of his brain at Liverpool’s Alder Hey Hospital.
Mark, 44, a machine operator, says: “We were utterly devastated. To be told our son needed a brain scan after we had thought we were only going for an eye test was awful.
“We had gone through all these months thinking something was not right, but were told Alfie would catch up.
“Then suddenly, we were faced with the reality that something was actually wrong.”
Rachel says: “Alfie had the MRI when he was 15 months old and it wasn’t pleasant, as he had to be sedated for it.
“We were then told it would take three months for the results to come back and then we were told it would take six months, which would have taken us to November 2009.
“But in the August of 2009 Alfie was rushed to hospital with pneumonia.
“We had been out for the day to the beach and everything was fine.
“Then we put Alfie to bed and half-an-hour later, we woke up and found Alfie couldn’t breathe, so we called an ambulance.
“Alfie was taken to Wigan Hospital and they initially thought he had swine flu.
“We were then introduced to a neurologist who, after seeing Alfie, told us that there was something wrong.
“When we told him we were waiting until November to get Alfie’s MRI results, he told us we needed to see them now and he had the results couriered over.
“The results showed a few abnormalities, but nothing that explained Alfie’s problems.”
Alfie spent two weeks in hospital fighting pneumonia, and at one point his family feared they might lose him.
A series of tests were carried out on Alfie while he was in hospital, but everything came back negative.
He was then forwarded on to the genetic team at Alder Hey Hospital.
It was backwards and forwards to hospital for Alfie and then eventually, in January 2012, specialists told his parents they had found an abnormality which was the cause of Alfie’s problems.
Alfie was diagnosed with a condition called MECP2 Duplication Syndrome.
Mark explains: “It is an incredibly rare condition and we were told that Alfie was only the seventh child in the UK to be diagnosed with it.
“The geneticist knew very little about the disorder himself because it is so rare, and he told us we would be writing the book with Alfie.
“Alfie’s condition means he is severely physically and mentally impaired.
“He is classed as having profound and multiple learning difficulties.
“We googled the condition and discovered that it has a shortened life expectancy.
“More than half the children with it don’t make it past the age of 25. This is mainly down to the pneumonia.
“Children with the disorder suffer from chronic chest infections and pneumonia and have a chance of developing epilepsy.”
Mark and Rachel were given the details of the Facebook page set up for families affected by MECP2 Duplication Syndrome in the UK.
This has been a lifeline for them, with families sharing information to get a better understanding of the condition.
Rachel says: “Alfie is now six and he is lovely.
“He is happy, smiling and cheeky and to look at him, you would not know there was anything wrong as he looks like any other little boy.
“However, Alfie cannot walk or talk and is mentally impaired.
“Alfie loves music and can shuffle around on his bottom on the floor.
“He loves musical instruments and playing with his big brother and other children.
“Despite his problems, Alfie is a very happy child and brings us a lot of joy.”
Only recently, Alfie’s family was dealt another blow as Alfie suffered his first seizures. Mark and Rachel are taking turns to stay with him during the night.
There are now around 28 boys and one girl with MECP2 Duplication Syndrome in the UK and Mark is a trustee and secretary of the charity.
The aim of the charity is to provide financial assistance to families with the disorder.
Mark and Rachel also set up a Facebook page for Alfie and established the Alfie Lund Fund in 2012 to raise money for specialist equipment for Alfie.
It was through Alfie’s Facebook page that the idea of creating the world’s largest football chain was born.
Mark explains: “There are around 25,000 people on Alfie’s Facebook page.
“I asked which football teams people supported, and I realised there were supporters from every league club as well as non-league clubs all over the country.
“There were supporters from more than 350 clubs in total.
“I had a little collection of football scarves and shirts, so I asked other people through Facebook if they had any old football scarves and shirts they could send me.
“Our aim is to put all these football items together and create the longest ever chain of football-related items.
“We want to create a Guinn-ess World Record and have not found anything like it as yet. The response has been absolutely phenomenal, and we are getting parcels through the door all the time.
“We have had parcels from so many different countries too, including Australia, Poland, Germany and Holland.
“Word of mouth seems to be getting about and we are getting a steady flow of football items old and new arriving.”
The football chain has been put together and is already more than two miles long.
The team are now taking the chain to football grounds around the country, and at the end of the 2014/15 football season hopes to sell or auction off as much of the chain as possible, with all the money raised going to MECP2 Duplication UK to benefit all the children in the UK living with the disorder.
Mark says: “We have taken the football chain to Burscough Richmond and also Burscough FC, where Alfie was also match mascot.
“In January, we will be taking it to Stockport County and Skelmersdale United, and we have many other visits planned, such as ones to Southport and Ashford United.
“Alfie has a huge amount of support and love, both from the community and through his Facebook page.
“Through the football chain, we are turning this support into raising the profile of the MECP2 Duplication charity and funds for the cause.”
To find out more or to donate football, visit: www.facebook.com/thealfiefund or e-mail: firstname.lastname@example.org