Family raising thousands of pounds to help daughter walk

The infection is relatively common but can have very serious consequences for a baby if a woman is unlucky enough to catch it while pregnant.

Isla Rose's mum Lauren endured a difficult pregnancy and after she was born a month early weighing just over four pounds she and her husband Oliver received the devastating news that their daughter had brain damage and might never learn to walk or talk.

However, four years later Isla Rose has started school and is making progress with the help of regular physiotherapy.

Lauren and Oliver raised £5,000 at a community event last year to get her extra private sessions in addition to the physio provided by the NHS.

Now, though, the family is waiting to hear if she will be able to have an operation at Alder Hey Children’s Hospital in Liverpool and is looking to raise more than £10,000 to help with the intensive rehabilitation afterwards.

It is ultimately hoped that all the physiotherapy and the skills of specialists in hospital will relax Isla Rose’s muscles sufficiently that she will be able to properly get on her feet.

Lauren, 24, said: “CMV is more common than things like Down’s Syndrome but it’s horrific if you catch it while you’re pregnant, and just my luck I caught it within those nine months when I was having Isla Rose.

“Most people would pass it off as cold symptoms but because the unborn child is growing and forming it affects them.

“The pregnancy was problematic throughout. She wasn’t growing, then she had fluid on her brain. They didn’t know why though until she was actually born and she was tiny.

“At around 10 days old an MRI of her brain showed severe brain damage and she also failed her hearing test. As young parents to be told your baby is anything but perfect is absolutely soul-destroying and we were heartbroken.

“Doctors couldn’t tell us whether Isla Rose would sit up, crawl, roll or eat solids. Everything they said she might not be able to do she is trying to do.

“The NHS has given us everything we need in terms of physio but it’s just not enough to help her walk, so we’ve gone private to give her the best chance of getting on her feet.”

Isla Rose currently receives physio with the NHS at Platt Bridge and at a centre in Warrington, while the London Orthotics Consultancy have provided splints which support her ankles when standing.

Lauren and Oliver, 25, were recently looking at Isla Rose having Botox injections into her muscles to help reduce spasticity.

As a longer-term solution they are looking at the possibility of selective dorsal rhizotomy (SDR) surgery at Alder Hey, which cuts the nerve rootlets in her spinal canal which are causing the problems by sending abnormal signals to her muscles.

However, Lauren says that there is a strict criteria for who is eligible for this and if Isla Rose is not at the correct level they would have to pay around £16,000 for the procedure.

And if it does go ahead Isla Rose will then need around 18 months of physio and rehab work to help her recover from the surgery and give her the best chance of walking.

Isla Rose has faced medical battles throughout her short life. She was facing the possibility of blindness for much of her first year until medication managed to save her eyesight.

She also has to have medication three times a day to help relax the tightness in her muscles.

Lauren says the family, which also includes Isla Rose’s one-year-old baby sister Harper Rose, has had a very difficult 2020 with the Covid-19 pandemic which has meant many of the in-person physio sessions were stopped.

Fund-raising has also proved extremely tough in a year of lockdowns and precarious finances.

Lauren said: “We’ve really been set back due to the pandemic. The clinics shut down and Isla Rose really suffered, losing strength in her legs as they got tighter.

“We’ve also had to try to do all our fund-raising virtually which has been an absolute nightmare. A gym in Wigan raised about £2,000 for us with members donating and hampers, which was an amazing help.

“Last year we booked a function room and had a fund-raiser with cake sales and amazing auctions. We’ve really struggled this year. It’s really difficult to ask small businesses for donations when most of them are closed.”

Despite the setbacks Lauren and Oliver have managed to raise around £6,000 and are now being supported in their efforts by charity Just 4 Children.

Isla Rose has also started going to school this year and is in reception at Lowton Junior and Infant School. She has a special chair and a standing frame which enables her to take part in activities and although she still struggles to talk she communicates using sign language and receives one-to-one support in the classroom.

Lauren said she and Oliver are both extremely proud of how Isla Rose takes the considerable obstacles she faces in her stride.

She said: “She is such a happy child. Nothing fazes her. She has days when she gets tired from the medication she has to take but we think she’s used to that now.

“We’re definitely proud of her. Sometimes she is definitely stronger than us.”

To find out more about the fund-raising campaign visit www.justgiving.com/campaign/IslaRoseswishtowalk

You can also donate by texting ISLAROSE to 70085.

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