2lb baby born at 27 weeks defies odds and loves life – and football!

Throughout her pregnancy, Zenith and her husband Richard were told to prepare for the worst, when doctors said their baby wasn’t viable and he didn’t have a heartbeat.

But Herbie was a fighter.

The tiny baby weighed just 2lb 3oz when he was born and now, 11 years on, he is enjoying his last few weeks at Chapelford Village Primary School before moving onto Sir Thomas Boteler CE High School in September.

He is a happy, bright and active youngster who is thriving at school and football mad but his parents never thought this would be possible after Herbie was diagnosed with chromosome 15q11.2 deletion at the age of three.

Today, Thursday, June 13, is Rare Chromosome Disorder Awareness Day – a chance to celebrate anyone with a chromosome or gene disorder and educate people about the conditions.

Everyone has 23 pairs of chromosomes – 46 in all – and for each pair you get one chromosome from your mother and one from your father.

Around one in 150 babies is born with a chromosomal condition and the awareness day is aimed at celebrating all the unique children and adults and their amazing achievements.

After failing his developmental checks as a baby and a toddler, Herbie was slow to walk and referred to a speech therapist at the age of one and then a paediatrician before getting some answers when he was three.

The chromosome 15q11.2 deletion is known as Burnside-Butler syndrome and the most common traits include delays in development speech and motor skills.

Some children suffer from birth defects, seizures and heart problems as well as sensory difficulties, hearing problems and muscle spasms.

It can also cause behavioural and emotional problems and some children will have ADHD and autism.

Zenith said: “The most significant difficulties Herbie faces due to this deletion are to do with speech and language difficulties.

“His speech is difficult to understand to the untrained ear and he has hearing difficulties and developmental delay as well as behavioural and emotional difficulties, motor skill delays and painful legs.

“He’s an incredibly loving little boy and wants to be everyone’s friend.

“He is now at the age where he understands he’s different but he embraces his difficulties and tries really hard not to let them hold him back.

“Unfortunately, his difficulties do make him stand out from his peers, particularly his loud noises, which leaves him vulnerable to being left out by others.

“He plays on two different inclusion football teams and one inclusion rugby team - he is football crazy!

“When he’s playing sport, he has breaks when his legs hurt but he is scared of missing out, so has worked out that if he’s in goal, then he can rest his legs and keep playing.

“Now he’s an excellent keeper!”

Herbie plays for two inclusion football teams and one inclusion rugby team

Herbie has four older sisters who all have additional needs of their own but he is the only one with this particular chromosome deletion.

He struggles with understanding certain situations and other people’s reactions and he likes things done in a set way.

Zenith said: “Herbie can get upset if he thinks something isn’t right.

“A lot of the time it’s his perception of a situation that is the issue, which he can’t understand.

“Herbie doesn’t cope very well with change and has already started to stress about going to high school in September.

“This is something we are actively working on with him at the moment but his emotions have been getting the better of him.

“Herbie wasn’t predicted to do well when he first started primary school but he’s gone from strength to strength and that is very much down to his determination.

“He likes facts and loves learning.

“He has a lot of sensory difficulties and struggles with holding a pen properly.

“He finds it easier to type on a tablet or laptop, which he often does at school.

“Herbie is currently wearing age 14-15 clothes – not bad for a boy who was just over 2lb at birth!”

Rare Chromosome Awareness Day is the opportunity to tell people how chromosome deletion affects people’s lives and how it impacts their families’ lives too.

Herbie is involved with genetic research through the charity Unique, as his deletion is a rare one.

The family receives a report each year detailing all the new discoveries about his deletion.

Herbie is involved with genetic research through the charity Unique

Zenith said: “There’s still a lot more to learn about this and other rare chromosome disorders.

“It’s important to have the awareness day to do just that - raise awareness.

“There are so many different rare chromosome disorders, yet people know nothing about them.

“We didn’t really either until it affected our family.

“It’s a day to celebrate children like Herbie.

“We don’t know what the future holds.

“Herbie wants to be involved with inclusive sport when he grows up and I’m sure he’ll achieve that.

“There are more opportunities out there now than ever before and it seems like the rest of the world is finally being more inclusive in sport.”