A Unique Child: Inclusion - Supporting ... Angelina

When Angelina was four months old, she had her first seizure. After days of tests, she was diagnosed with Sturge-Weber Syndrome, which damages nerves in the brain and causes tissue to calcify.

The syndrome causes epilepsy, developmental delays, glaucoma and partial paralysis in one side of the body and is characterised by a port wine stain, generally on one side of the face.

Doctors initially controlled the seizures with medication, but when they worsened Angelina's mother, Lisa Massingham, was told surgery may be able to stop the seizures, which were permanently damaging her brain.

The surgeon suggested a hemispherectomy, a procedure disconnecting the left and right hemispheres of the brain. He warned Angelina's parents that she would end up with a severe weakness down the left side of her body; that she would never be able to use her left hand for fine motor tasks, and that she would suffer a strong weakness around her ankle and the loss of the left side in her field of vision. Ms Massingham calls it 'the biggest decision we had ever had to make'.

When Angelina was one year old, surgeons at Great Ormond Street Hospital in London carried out the seven-hour operation, detached the damaged tissue and cut the nerve connections between the left and right sides of her brain. The operation was a success and Angelina has not had a single seizure since.

Being so young, the left side of her brain will learn to perform the functions of the right half, meaning she should be able to lead a normal life.

The paralysis on one side of her body (hemiplegia) did worsen after surgery, and she wears a splint on her left leg to help support her ankle and a Lycra gauntlet on her left arm to help give sensory stimulation. She does not use her left hand at all, and she has also lost her visual field on the left side in both her eyes. However, Angelina's mother believes that if she hadn't had the surgery, she wouldn't be able to walk because the seizures were steadily destroying her brain.

STARTING NURSERY

Since the surgery, Ms Massingham has focused on Angelina's social and physical development. At the beginning of this year, Angelina, who is now two, started attending Strawberry Patch Nursery in Holt, Norfolk. Ms Massingham chose Strawberry Patch because 'it is very relaxed and has a lot of space both in and outside the nursery'.

She adds, 'I didn't want a structured setting as Angelina doesn't have the concentration to sit down and listen while the register is called out as she has a learning delay.'

For Strawberry Patch's manager, Sue Daniels, it was 'a pleasure to offer Angelina a place at the nursery'.

'We are an inclusive setting and we are more than happy to accept children with additional needs. We believe every child has a right to have a place in an early years setting.'

In terms of adapting the environment for Angelina's needs, Ms Daniels says, 'We offer an enabling environment for all the children to access who attend the nursery, so it wasn't necessary to make any changes for Angelina.'

DEVELOPING LEARNING

Linda Wells is Angelina's key person and the nursery SENCO (special educational needs co-ordinator).

She works with Angelina on a one-to-one basis and says, 'We have an open-door policy and when Angelina chooses to go outside, one of her favourite activities is stomping in the large sandpit, which supports her gross motor development. Recently when it rained, she moved her stomping to puddle splashing.'

Angelina also enjoys using the touch-screen computer at the nursery, where she is learning to develop her fine motor skills.

'Some of the ways we will encourage Angelina to mark make will be putting some paint in sealed laminating pouches where she can move the paint around with her fingers or hands, and providing wet sand or sand in puddles and sticks in the mud,' says Ms Wells.

'I recently used a sensory bubble lamp with her and she showed interest by watching the bubbles bobbing up and down, also by moving her hands up and down the sides of the tube with the flow of the bubbles. There is also a programme on the computer where balloons float up on

the screen and you have to touch the balloon to pop them and this helps to strengthen her vision,' she adds.

LIAISING WITH PARENTS

'At the start of each session, we have a catch-up with Lisa as to how Angelina has been in the night and every change in terms of her development, as we would with any parent,' says Ms Wells.

Angelina has been attending the nursery only since the start of the year so outside agencies have been waiting for her to settle in properly before going in to work with her.

'The physiotherapist and occupational therapist are due to go and see her at the nursery. Portage is working with her on certain goals and they are going to go and discuss these with the nursery,' explains Angelina's mum. 'Portage is also doing signing with her and the nursery is doing this as well as it helps with her speech.'

A speech therapist is also due to start working with Angelina at the nursery very soon.

TRAINING AND FUNDING

Angelina has funding for one-to-one sessions two afternoons per week and each session lasts for two-and-a-half hours.

Ms Wells is a trained SENCO and recently did her refresher training. Before Angelina started, the whole team attended an epilepsy awareness course to learn what to do if she has a seizure.

So far, the children haven't asked why Angelina wears a splint on her leg or a gauntlet on her arm.

'If they do ask, I will tell them her muscles aren't strong enough, so that is why she needs to wear one,' says Ms Wells.

HOW ANGELINA BENEFITS

Angelina has significant language delay, but her mother has already noticed a difference in Angelina's speech since she started attending Strawberry Patch.

'She is really trying to talk since going to nursery and she makes a lot more sounds. It is great as she is copying the other children,' she says.

'She has never crawled but I didn't realise how badly affected she was by the condition until she started at nursery and I noticed how little speech she had compared to the other children.'

As for Angelina's vision, the loss of the visual field on the left side will be permanent. Her mother continues, 'The doctors have told me that it will never come back and that when she starts to read, she will miss out part of the word she is reading.'

For the moment, she appreciates all the benefits that nursery is bringing her daughter. 'Angelina hasn't slept very well since surgery so I have to give her melatonin at night, but going to nursery really helps to tire her out,' she explains.

'The nursery says she is very popular, which is lovely, and children ask when she is coming. Angelina loves going there. She is a happy girl and I am so pleased with Strawberry Patch. They have been great.'

Ms Massingham has become a trustee of Sturge-Weber Foundation UK and wants to make both early years professionals and health professionals more aware of the syndrome.

'There is such a lack of awareness of Sturge-Weber Syndrome. Most children with the condition do have a birthmark but some have the condition without the birthmark. Complications caused by the condition normally start before the age of one, but again I know children who have not had complications such as seizures until age three plus. For these parents, it's even harder to get the support needed for their children while at nursery. This condition needs early management and control of seizures to prevent damage occurring, as this then leads to more problems such as learning delays and hemiplegia.

MORE INFORMATION

• A type of birthmark called a port wine stain on the face of a newborn child is symptomatic of Sturge-Weber syndrome

• Three out of 1,000 children are born with a port wine stain but only 8 per cent of these will have Sturge-Weber syndrome

• The Sturge-Weber Foundation UK is a voluntary support group for families and adult sufferers affected by Sturge-Weber syndrome www.sturgeweber.org.uk

• Lisa Massingham's blog about Angelina - www.angelinasdreams.org/