Faye's trike has changed her life
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LEARNING to ride a bike is a normal part of growing up most childen and parents take for granted.
For one Moray youngster, however, it is among many daily dangers she faces.
On the outside Faye Cruickshank is just like any other four-year-old girl, but a rare neurological condition means childhood is a constant struggle for her and her devoted family.
Faye’s brain did not develop properly in the womb, leaving her with a wide range of developmental problems. Her condition is known as agenesis of the corpus collosum and absent septum of the pellicidum.
Her smile lights up a room but life is difficult for Faye, mum Jodie (30) and dad Grant (47), of Dean of Guild of Way in Elgin.
Faye has problems walking because of low muscle tone, has poor eyesight, very sensitive hearing – which means loud or sudden noises can frighten her, does not eat much, is a poor sleeper, and also suffers from severe anxiety.
Her condition also means she experiences behavioural problems, and finds it difficult to interact with other children and people.
Faye has no sense of danger and cannot be left alone, so riding a normal bike is just too hazardous.
The gift of a special trike from local children’s charity, Keane’s Stars, has transformed her life.
Faye can be securely strapped in to the sturdy trike, which can be pushed by her parents using a special handle.
Jodie said: “It has made a huge difference and she just loves it. On a normal bike we would be waiting for her to fall. She has broken bones a few times because of her low muscle tone.”
The family was overwhelmed by the offer of a trike from the charity, which was set up for Elgin youngster, Keane Campbell, by his grandmother Hazel Robertson, and his mum Jenna Robertson, who has known Jodie since they were at school together.
Faye will be able to use the trike up to the age of 12, and Jodie hopes eventually her muscles will develop enough for her to ride it on her own without any help.
The trike has given the family a huge boost as they continue to cope with an “invisible condition” which affects every aspect of Faye’s life.
Faye wears special boots to help her walk, needs glasses, and has to be given 12 milligrammes of melatonin (a hormone which occurs naturally in the body) each night to help her sleep because her own body does not produce enough.
She still needs help getting dressed, is not yet out of nappies, and has to use a sippy cup for drinks.
Her difficulty in interacting and forming relationships with other children has made nursery a big challenge.
She does have a great relationship with her brothers Aidan (8) and Ben (7), who don’t fully understand the condition but are very patient with Faye - who can lash out because of her condition - and supportive of their mum and dad.
Jodie, who is expecting another child this month, admits Faye starting school after the summer will be another big hurdle she has to overcome.
However, the support of nursery and school staff, friends and family, and a network of neurologists and clinical psychologists helps Faye lead as normal a life as possible. She also used to attend the Ladybird Developmental Playgroup in Lossiemouth.
Faye, who will be five next month, currently attends the Alba Place centre in Elgin two nights a month for respite care and the Crossroads charity also comes in to the family home twice a month to provide support.
Jodie admits that coping with the condition is difficult, especially as it is so rare and few people have heard of it. To many people it can look simply as if Faye is having a tantrum when her emotions are running out of control.
Simple pleasures like going to the park, cinema or swimming are almost impossible because sudden noises can startle Faye and cause her emotional distress. Travelling anywhere is also difficult as she suffers from severe car sickness.
Jodie said while they want Faye to live as independent a life as possible, they have to wrap her in cotton wool at times to protect her.
Added Jodie: “At times we don’t know where to turn because it is not such a well known condition. Other conditions like Autism people know more about. When I say what Faye has people look at you with a blank expression.”
Although a rare condition, Jodie and the family have found support from a teenage girl in Elgin who also suffers from it after meeting her through social media.
Faye’s condition was first flagged up at a 20-week scan and later confirmed by an MRI scan.
“To begin with I blamed myself,” said Jodie, “because I was the one carrying her, and you think it is something you have done. As times goes on you get past that and you are just thinking more about her and how it affects her.”
The future is uncertain for Faye, who only started to walk aged 21
At one point the family feared she might never talk, and before speaking her first words at the age of three she had used sign language and basic pointing to communicate.
Jodie admits she will never give Faye a row or tell her to be quiet – something most parents have to do on occasion – because the moments when she speaks or interacts are so precious.
The first time Faye said ‘I love you’ was another special moment.
The family remain optimistic despite Faye’s problems and are determined not to let it dominate their life.
Jodie said: “It is something that is never going to leave her. At each stage of her life she is going to have hurdles.”
