A brave schoolgirl living with a severe disability now faces a major spinal operation

Megan McGarva, who is 12, suffers from a rare genetic condition which means she can't walk, talk or feed herself.

The youngster, lives in Larkfield with her parents Jane Christie, Stephen McGarva and sister Rebecca was born with CDKL5 and she has scoliosis - a sideways curve in the spine - suffers frequent epileptic seizures and needs 24-hour care.

Jane, 51, said: "Her scoliosis is 64.5 per cent, which is quite severe."

It is recommended that children with curvature of 45 to 50 per cent and over receive spinal fusion surgery.

Megan currently has to wear a spinal jacket and is fed through her stomach via a gastrostomy bag.

Her spinal problem means the jacket is causing pressure on the feeding bag and irritating her skin.

Jane said: "She tends to sit with her head flopping to the side, so hopefully this operation will improve her posture.

"Now that she has taken a growth spurt and is reaching puberty, I think this is a good time to do the operation."

Surgery would mean Megan would not have to wear a spinal jacket anymore to give her support.

The operation will involve realigning and fusing together the curved vertebrate which will heal into a single solid bone.

The surgery also uses a bone graft to help promote the fusion, with small pieces of bone placed into the spaces between the vertebrae to be fused.

Metal rods are used to hold the spine in place until fusion happens.

Jane admits that it will be tough to see Megan go through such an invasive operation but she has been reassured by her daughter's physiotherapist and orthotist, the person who makes her support jacket.

Jane said: "It will help her posture and she won't have to wear a spinal jacket, she will be free in that way.

"Hopefully it will change her life."

Every day brings different challenges for Megan, who frequently has seizures despite taking medication for epilepsy.

Jane said: "We have a honeymoon period for a couple of months, then Megan can take a seizure for a few minutes and sleep for up to 12 hours.

"Then on another day she could have a seizure for 10 minutes and sleep for 30 seconds.

"There's no rhyme or reason to it."

Megan's seizures can also be so severe she can be violently sick without warning.

Jane said: "I we could only find something that could would stop the epilepsy.

"It's the worst part of her illness and it could be fatal."

Megan has found freedom at Craigmarloch School where with the aid of a neck ring she can move around the hydrotherapy pool independently and she also enjoys rebound therapy using a trampoline.

Stephen, 55, who works for Amazon part-time, said: "The company have been very supportive and raised £2,500 for the school."

Jane and Stephen get an update every night from the school to let them know how Megan's day was.

Jane said: "It lifts you to know that she's had a good day and we reply how she has been that night."

The family are also thankful for all the support they receive from the community, and to family members including Jane's sons from her first marriage.

Calum, 30, and his girlfriend take the girls sometimes to give them a break and they also enjoy going out for walks down at Lunderston Bay to try to keep fit.

Jane also has Stuart, 33, and Ross who is 24.

Megan like other youngsters enjoys music and recently enjoyed a visit with school to the Royal Concert Hall.

Jane said: "She enjoys music, her teacher said she never moved the whole time during the concert."

The family were recently given a ray of hope after attending a CDKL5 conference in Birmingham and hearing about new clinical trials to help people with Rett Syndrome, a rare genetic disorder that affects brain development, resulting in severe mental and physical disability.

This is a similar condition to Megan's.

Jane said: "They are trying to bypass what is going on in the brain, as it is not making the protein needed to make the brain work."

The family know help like this may be much further in the future for Megan and just try to take each day as it comes.

Jane said: "We're getting older and Megan is getting bigger.

"She doesn't get chest infections anymore thanks to long-term antibiotics, she gets them three times and week and it really has helped.

"We also have a suction machine to help with a build-up of phlegm.

"At first I thought 'oh, this is another piece of equipment' - it can be a bit overwhelming at times but you've got to stay positive."