The dad of a five-year-old with a rare genetic condition was told by doctors they don’t know what will happen or how his daughter will develop as she gets older.

April Ells was diagnosed with a chromosomal disorder called Mosaic 18Q Deletion just a few days after she was born at Tunbridge Wells Hospital.

Her dad, Chris Ells, said April’s syndrome was not picked up in any prenatal examinations and it was not until her doctors noticed she had a small chin and long fingers that they suggested further tests.

As a result, the youngster can’t communicate, crawl or walk, stand, or feed herself but can hold herself up for a few seconds and has recently learned how to pick objects up and move them.

Chris explained: “We were not looking out for those things. We only noticed that her toes were touching her shins but didn’t think much of it.”

A few days after she was born, in October 2018, April was diagnosed with the condition and had to attend multiple hospital appointments a week for the first few weeks of her life alongside her dad and mum, Sophie Makey.

Her condition means the youngster is missing part of her 18th chromosome, resulting in all the cells which duplicate from missing parts of its data.

It is known as mosaic as there is no way of knowing which cells don't have the right amount of genetic material as they are found all across the body.

It is thought around one in 40,000 babies are born with Mosaic 18Q Deletion, but every child will be affected differently as it depends on which cells are missing. Therefore, no one will be affected in the same way as April.

Chris, 35, added: “It was a complete fluke it happened. There is no real knowledge of April’s future or how she will develop. No doctor can tell us what will happen to her when she gets older.

“We have to take it each day as it comes. We have no idea what she will and will not be able to do but we are giving her the best chance in life.”

As a result of the syndrome, the Nexus School pupil also has a severe global developmental delay which means that although April is five years old she is behind her peers.

The dad-of-two added: “She could develop overnight, we just do not know, but what this means daily, is that we have to care for her 24/7. Parenting for us is very different from other parents on the playground.”

To help April, the family, of Priestley Drive, Tonbridge, have specialised equipment set up around their home to help aid her development but can be incredibly expensive.

They wanted to buy a bike to help April’s movement and build her muscles to help her walk in the future and were able to do so with the help of the biker’s association Widows Sons Grand Chapter Band of Brothers and Radiant Star Lodge, which based in Dartford.

The group fundraised on behalf of the family and presented April with the new pink bicycle a few weeks ago.

Chris said: “It means the world to us. It might just be a bike, but to us, it is a bit of freedom that April cannot have otherwise.

“It is a tiny bit of normality that means we can go out as a family, walk around the park and she can be on her bike. For her younger sister Rileigh, it means she can go out on her bike with her sister.

“As the years have passed, April's development has been limited so it is something we did not think would be able to happen but now we have it.

“We see when she gets the wind in her face, she lights up. It is those little things we take for granted but for her, it is a thing that is as simple as a bike and it gives her those experiences she would not be able to have.”