THE Helensburgh mum of a two-year-old girl who is living with an extremely rare genetic condition says the family is “taking each day as it comes” as they face an unknown future.

Tot Cleo Rose Alderton was diagnosed with Phelan-McDermid Syndrome (PMS) in February after enduring more than a year of tests.

PMS, which affects one in 4.6 million people world-wide is caused by a deletion, or loss, of the terminal segment of chromosome 22.

People with the syndrome have a delayed development, often don’t speak, and have low tone in their limbs.

Cleo's mum, Cherry O'Brien, and dad Andy met the Advertiser this week and revealed the agonising wait they endured for an official diagnosis of Cleo's condition.

Cherry, 29, said: “When Cleo was around nine months old we started to notice differences. She wasn’t doing what other children her age were.

“We took her to the doctor and she underwent a huge amount of tests and was always getting blood taken to rule out other conditions.

“The waiting was the worst part. I just thought 'whatever’s wrong with her, I’ll deal with it', but the not knowing was horrible.

"I just wanted my little girl to be happy.”

When Cleo was finally diagnosed earlier this year, it wasn’t only the family who had to learn about the condition.

Her doctors found themselves in a similar position as only around 130 people are diagnosed with PMS in the UK and Ireland.

Only 1,500 people are known to be living with the syndrome worldwide, according to the PMS-related charity website.

Cherry said the family's first step was to set about researching the condition to gather as much information as they could.

The mum-of-two added: “The doctor gave us a website to visit and Andy went to the library and printed a load of information off.

"We now have a booklet to refer to, which is great, and we even share it with new doctors, who often haven’t heard of PMS.”

However, despite doing their research, Cherry and Andy have been told not to compare Cleo to anyone else with the condition, because PMS affects everyone differently.

The family, which also includes eight-year-old Andrew, has had to adapt all aspects of their lives, from sleeping patterns to planning days out.

Cherry explained: “The big thing is structure. Cleo needs a routine so she knows what happens when.

"Cleo gets up at 5am and has a long afternoon nap, so her waking day is normally around nine hours.

"She watches Baby TV and is very responsive to sound and colour and reacts really well to the TV.

“She doesn’t play with toys – the TV is her thing. We recently bought a portable DVD player and Baby TV DVDs so that Cleo can watch the TV even when we go out.

“We have all adapted. We don’t get out much, but Cleo comes first, and if we go out as a family we need to bring her home in time for bed to keep the routine.”

Cherry and Andy, who live in Cardross, explained that caring for Cleo was a full time job and although they wouldn’t change it, it can take its toll.

Andy, 28, added: “It’s changed our lives but for the better. Cleo is Cleo, and we wouldn’t have her any other way.

“It’s life, and we adapt to it. Everything is trial and error to see what works and we are all learning.”

Cherry, who used to work at Ellie's Cellar in Helensburgh, said: “It’s hard to balance time with Andrew and looking after Cleo.

"Andy’s mum, Mags, has been great, and we can leave Cleo with her to go and spend quality time with Andrew.

"We don’t want him to feel like it's all Cleo.

“Andrew is great with her and loves her unconditionally but it's not what he expected. Other kids his age are playing with their siblings.”

The couple have been grateful not only for the help of the medical professionals since Cleo’s diagnosis, but also for the support they have been shown by family and friends, who have been on the other end of the phone for advice, or there to watch Cleo while they grabbed some shut-eye and had some food.

But Cherry explained that the biggest surprise is the support they have been shown by the wider community and the help they have received from people who even don’t know the family, or Cleo, but who heard about her rare syndrome and wanted to help.

The family has to buy specialist equipment to help Cleo live life to the full and to help take a little of the pressure off themselves.

The tot has a specially adapted buggy, and through local fund-raising they were able to get a specialised car seat worth £2,000 which enables them to safely get Cleo into their family car.

And a host of companies, clubs and community groups in Helensburgh and Cardross have rallied round to help.

Ardardan Estate, the Co-operative, J&S Coyle, Partners Hairdressers, The Wine Shop, Colgrain Bowling Club and Helensburgh's Lodge St George No. 503 have helped to raise £3,370, which has been put by the family into a special account for Cleo.

Cherry said: “Cleo needs specialist things for her room, including sensory toys which can be really expensive.

“We got her an acrylic mirror to encourage her to look at herself and then, in turn, other people, which cost £840 but can’t be broken.

“She will need new things throughout her life, and having the money there takes pressure off of us, and stops us worrying that she won’t be able to get things.

“I am so immensely grateful for all the support we have received.”

Although PMS affects everyone differently, the family is hopeful Cleo will be able to enjoy life to the best of her ability.

The family has started to learn Makaton, a programme of signs and symbols, in the hope that Cleo will be able to communicate.

It is hoped Cleo will be able to attend school a few days a week, at either Cardross Primary, alongside her brother, or Parklands in Helensburgh, though that depends on Cleo’s development between now and then.

But for now the family is taking each day as it comes, constantly learning, adapting and enjoying life with their “happy little girl".