Mum launches fundraising appeal for disabled daughter

A DETERMINED mother has launched a fundraising appeal to provide her disabled daughter with a better quality of life now and into the future.

Three-and-a-half-year-old Lola Aitken, from Milton of Leys, has been diagnosed with dyskinetic cerebral palsy alongside a complex genetic disorder.

Her mobility and learning development are affected.

According to mum Ciara Ewing (29), Lola is at the developmental stage typical for a two-year-old.

While her life is far from entirely bleak Miss Ewing has been inspired by the Step Up for Sam campaign launched by the family of Inverness toddler Sam Douglas.

Another youngster with complex needs, his family’s determined fundraising has secured him access to treatments which have improved his quality of life.

"Lola is a wonderful, funny, happy little girl," said her mum.

"She is very sociable and always smiling and is determined nothing will hold her back, but there are things that could make her life better. The NHS is fantastic but there is only so much it can do.

"It’s difficult to ask for help, but if it can make life even a little better for Lola, it’s worth it."

Separated from Lola’s father, Miss Ewing says she is well supported by her new partner, but because he works offshore and most of her family are based in Fort William she had to give up work to look after Lola and admits there have been struggles.

"Lola was born five weeks early, in January 2015, weighing just 5lb 4oz and contracted sepsis," Miss Ewing said. "From then on her development was poor.

"She went through lots of tests and eventually we were told they thought she had a life-limiting condition called leukodystrophy.

"That’s the sort of news that just hits you like a ton of bricks.

"Thankfully it turned out the diagnosis was incorrect, but it is still the case that Lola will need support for the rest of her life."

Miss Ewing became friendly with Sam Douglas’s mum Stephanie by chance, when both attended Raigmore Hospital at the same time, when their children were suffering from croup.

"We just got talking and everything that she and her family have been able to achieve for Sam has just been fantastic.

"It’s important to say that Sam’s and Lola’s conditions are very different, but it’s the finding out about everything that’s out there and the impact that might have that is so inspiring.

"Lola doesn’t let much hold her back. She loves playing outside, especially in the rain, she goes to the TFX Performing Arts Academy, she goes swimming, and she is in mainstream nursery at Milton of Leys Primary School.

"But she wakes up a lot of the time in pain. She suffers terrible muscle spasms. Her hand and arm function is limited and her hips, a lot of the time, are almost popping out of their joints.

"There are options out there for physio as well as different types of equipment that could all help, but it’s not on the NHS and it costs – everything beyond the basics costs."

Miss Ewing aims to raise £15,000 for treatment to aid in Lola’s independence and ensure a better quality of life for her and has put collection boxes in a number of local shops and launched an online appeal.

She also has plans for fundraising events in the future.

"I just want the best for my daughter, the same as any parent, and if anyone is able or willing to help with that we would be so grateful," she said.

To donate to Lola’s appeal go to https://just4children.org