Last updated at 10:29, Wednesday, 11 November 2009

BORN just two minutes apart, Mia and Lana Fong are identical twins. Mia, however, suffers from cerebal palsy.
Her parents Janice and Max talk to LEO CLARKE

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MIA Fong is a lovely little girl and is identical to her twin sister Lana in virtually every way.

Mia, the youngest by just two minutes, can communicate in her own way, sit up straight and has fantastic head control – but she needs 24-hour attention because of the severity of the disability.

There is a hope Mia will one day be able to move more independently thanks to specialist help.

Mia is just four-and-a-half years old and attends Brainwave, a centre which specialises in the welfare of disabled children, twice a year.

There, her parents Janice and husband Max, receive a programme to help Mia’s life become more comfortable and help her progress.

For 40 minutes a day, every day, Mia is massaged and has stretching and rolling exercises. Mia is now able to sit and can, with the aid of a specialist walker, to help her move more independently.

She also receives help from staff at Furness General Hospital and at Sandside School.

Mia and Lana have an elder sister Kerryn, who is 14.

When Janice was 12 weeks into her pregnancy, a scan at Furness General Hospital picked up what seemed to be a problem and it was discovered the babies suffered from a condition called Twin to Twin Syndrome.

Janice was referred to Newcastle Royal Victoria for treatment and at 38 weeks the twins were born, Lana weighing 5lbs 6oz and Mia 4lbs 8oz.

“At about four months when Lana started to roll over and things, Mia would lie on her tummy, she couldn’t do anything else and we felt there might be problems,” said Janice, 45. “We mentioned it to our health visitor who was really supportive and she wrote straight way and referred us to the Furness General Paediatric team.”

Mia was just nine months old when Janice and Max were told their daughter suffered from cerebral palsy.

“It wasn’t a shock but it hurt like hell, it hurt to have the confirmation,” said Janice.

Amazingly on the day of the diagnosis, Janice read an article in a national newspaper about Brainwave and immediately contacted them.

Some months later, and with an open mind, the family were heading to Bridgwater in Somerset for Mia to begin her treatment.

Brainwave works with families to deliver individual home-based therapy and exercise programmes that help children with disabilities and developmental delay to achieve their potential.

Their team of physiotherapists, occupational therapists, development therapists and teachers seek to transform the lives of children with disabilities.

By working with parents, giving them relevant therapy equipment and teaching them correct handling skills, they are empowered to actively participate in their child’s development.

Families are invited to the centre for a two-day initial assessment where a programme designed and the family are shown how to carry out the exercises, which they then do at home, returning to the centre every four to six months when the exercises are adjusted.

Speaking from the family home in Fair View, Dalton, Janice said: “The first session is done over a couple of days and basically what they do is an assessment of the child, but the difference is they assess them in a very positive way.

“When they are talking to you they don’t say she can’t do this or that, they actually say what a child can do and they then devise a programme to bring the child on and develop the child individually. It is very holistic.

“When they first started to handle Mia, she basically was like a little lump of jelly, she couldn’t do anything.

“She had enormous sensory problems so that meant that she didn’t like to be handled and also she had no awareness of the world around her.

“The first thing they did was to devise a programme to desensitise her, to get her used to being handled and also to sort of bring her into our world, and it worked.”

She says of Brainwave: “It is teaching us how to work with her and help ourselves, that in itself gives us a good feeling but secondly it’s the support from them, it is a very positive experience.

“You don’t want to have any unrealistic expectations but you do need sometimes people to sort of like be positive otherwise it’s too many negatives.”

Since the treatment, both from the NHS and Brainwave, Janice says of Mia: “She has fantastic head control, she can roll over and she can sit up so straight, it looks as though she has got a rod in her back, which is fantastic.

“It is down to a lot of hard work, the NHS, and also this programme.

“Anybody starting out on the programme has got to realise it is a huge commitment.

“They ask for it to be done six days a week, you get a day off, which 30 or 40 minutes a day is not actually a lot, but it’s fitting it into the day.

“What we’re hoping to do is to split the programme up into two or three parts. We will do some of the leg stretches in the morning before she goes to school. School will do some of the programme with her and, if necessary, we will do a little bit in the evening and split it up that way. It’s not ideal but it’s doable.”

Brainwave has another centre in Essex and a satellite service in Scotland and later this month will officially open their newest centre in Warrington, which Mai recently attended.

Janice says: “It is a huge step and a huge commitment from them and it is really fantastic because it is so central to the North West that it opens it up to Cumbria and there is nothing else in Cumbria at the moment.

“This is great, I know they have got a bit of a waiting list and they are only just finding their feet at the moment but in the future I think this centre is going to be a fantastic asset. Hopefully other parents from this area will realise that it’s somewhere they can go if they want to, and want to be so involved in helping the child to develop.”

The centre, says Janice, will take children of all disabilities.

Talking of the relationship between Lana, who attends Chapel Street Infant School, and Mia, Janice adds: “Mia absolutely idolises Lana and she knows what Lana’s needs are.

“If Lana’s crying or just trying it on Mia laughs. If Lana’s hurt herself and she is crying Mia cries as well, so she knows the difference between Lana’s cries, so we gauge what’s really going on with Lana by what Mia does.”

Max, 42, says: “I think she is just starting to realise now the Mia is her twin sister but before that she also thought of Mia as a baby sister.”

Janice says of Kerryn, a pupil at Dowdales School, Dalton: “From day one she has loved her sisters and she has a very special relationship with Mia and that will always be the case. She finds Lana as a perfectly normal, annoying four-year-old.”

Janice adds: “Mia can actually do nothing for herself. She can’t hold a beaker, she can’t drink, she can’t feed herself, she can’t even pick her nose, she can’t do anything for herself. She is totally dependent on somebody else for everything.

“I can’t see a point where she won’t need somebody with her at all times, but what we want to achieve is to give her as much independence as possible.

“If she lives to young adulthood we’ll be lucky, is what we think at this stage, and so in that short space of time that we have with her what we want for her is to let her achieve as much as she possibly can – to learn to tell us what she wants in whatever way she can and to enable her to do whatever she wants to do, and make her as independent as possible. This is what parents like us are faced with, and rather just accept it that she won’t live very long we have the opposite problem. This is how it is, let’s make her time with us as positive as possible.”

Janice adds: “She is a great child. Everybody that knows and works with Mia loves her. She is absolutely gorgeous, she is just a little sweetheart.”

Mia has a very important date for her diary later this month when she will meet the Countess of Wessex at the official unveiling of the Warrington Brainwave centre on November 18.

Brainwave, of which the countess is president, works with families to deliver individual home-based therapy programmes for children with disabilities and developmental delay. The charity currently sees 450 families a year – a very small proportion of those it could help.

Brainwave is dependent upon donations to carry out its work. To contribute or find out more, call 01278 429089 or visit: www.brainwave.org.uk

If anyone wishes to contact Janice you can do so by email janice@cowlinginsurance.co.uk or by ringing 01229 462014 or faxing: 01229 465094.

First published at 13:13, Tuesday, 10 November 2009
Published by http://www.nwemail.co.uk