15 Jun Why brave Little Lucie needs our help
AT THE age of three-and-a-half, Lucie Ballantyne has only just found out the reason why she can’t walk.
She might not understand the diagnosis but it’s been a long time coming for her mother – and is the final piece in a puzzle which has troubled her and doctors for months.
Genetic testing at Newcastle’s Centre for Life has revealed that Michelle Robson’s Disney-loving daughter has hereditary spastic paraplegia. It’s an inherited disorder that causes weakness and stiffness in the leg muscles and explains why Lucie cannot support her own weight or get around without a walking frame or wheelchair.
The diagnosis has provoked a mixed reaction in primary school worker Michelle, from Seaton Burn, . She’s relieved to have the mystery solved but does not know what the future holds.
“I’d never heard of the disorder,” said Michelle, whose older child, 13-year-old Will, is unaffected. Nor does she know of anyone in her family who has had any similar problems. But the faulty gene behind the condition could have been passed down from generations ago.
While there are all sorts of variations of it, and it can affect people in later life, single mum Michelle said: “Lucie must have had it from birth.”
She realised something was wrong around the time that Lucie was due to start walking. “When she should have been up on her feet and getting around, she couldn’t hold her own weight and used to flop,” she recalled. “At first I was just thinking she was late walking. Some children develop in different ways but something didn’t seem right – as a parent you know when that’s the case.”
Lucie’s legs were stiff and could not hold her up while her upper limbs and hands were fine. A health visitor sent her to a physiotherapist and he, too, was concerned.
Michelle said: “She was about 18 months to two years when they started looking into why she was not holding her weight.”
But – while Lucie took to using a walker and wearing leg straps for support – her condition remained undiagnosed.
“At first they thought she had cerebral palsy,” said Michelle. “But an MRI scan showed her brain was clear. Then I thought it was going to be one of those unknown things when some parents don’t know what is wrong with their children.”
Then came the genetic tests at the Centre for Life and an answer. Michelle said: “I don’t know what is going to happen; she’s always going to have some sort of problem and is going to need help with walking.”
But Lucie is only young and there may be future help available, she added. She has medication to help to relax her stiff leg muscles and has also been put on a waiting list to receive botox injections.
These will further work on the muscles and the plan is then to set her legs in plaster casts in the hope the end-result will be more flexibility and movement, albeit temporarily.
In the meantime, Lucie, who loves dolls as much as Disney characters, is enjoying life, which includes attending nursery every morning in Wideopen.
“The children are great with her,” said Michelle. “They say ‘beep beep – Lucie is coming through in her wheelchair.’ None of them has ever asked why has she got it; and they will all be going together to the next school too, where they will look after her.”
The nursery staff will be hosting their own Wear Yellow day next week ahead of the Sunshine Fund’s main event next Friday, all to raise funds for the Go Bananas appeal which is fund-raising to help 10 local disabled children, including Lucie.
The Chronicle charity’s month-long appeal, which is sponsored by the Metrocentre and the Eldon Square, has set itself a target of £60,000 to buy equipment for them all and on the wish-list for Lucie is a pushchair.
When Michelle was faced with a choice to receive a wheelchair or a pushchair from the local wheelchair services, she picked the former, saying: “I thought it would be better for her to have at school and to go out. And she can self-propel in it.”
But a new pushchair would prove easier for Michelle – and her own mother Freda who helps out – to handle and lift up and down stairs.
She said: “Lucie did have a little pushchair but it didn’t give her the support. The specialist one for older children has a higher back and longer leg part.”