Just leave my child in peace, pleads mother

Scotsman ^ | 5 Feb 2006 | MARCELLO MEGA

[Lorianne]

THE mother of a young girl who cannot walk, talk or see has been ordered by education chiefs to send her daughter to school or face legal action.

Gemma Thomson has a rare genetic disorder, severe epilepsy, vulnerability to chest infections, and is so frail she only breathes twice a minute.

But her mother, Caroline, has been threatened with legal proceedings unless she sends the 10-year-old to a special school at least half an hour's drive from their home in Dufftown, Aberdeenshire.

Her local authority is insisting Gemma attends school because she will get stimulation from contact with other children. Her mother has been warned that if she refuses, the case could be referred to a children's hearing.

But Thomson, 45, who wants to care for her daughter at home, has accused Aberdeenshire Council of being heavy-handed and "politically correct".

Her plea has the support of Ian Rankin, the best-selling crime novelist, who also has a son with epilepsy and the same genetic condition, Angelman Syndrome.

He said last night that while laws requiring every child to have an education were well intentioned, there were exceptional circumstances when the authorities should listen to parents.

Gemma was diagnosed with epilepsy and Angelman Syndrome, a chromosomal irregularity, when she was just three. Fewer than 1,000 people in the UK are affected, and the condition severely limits communication and development.

Those who can talk tend to have a vocabulary of no more than a handful of words. All Gemma can say is: "Mum". She cannot walk and a severe epileptic seizure two years ago left her blind. She responds to very little other than her mother's voice and music.

Pale and very frail, Gemma also has very irregular breathing, drawing breath only two or three times a minute. She is also prone to chest infections and has recently been too ill to attend Aberlour Primary.

Although most people with Angelman Syndrome have a normal life expectancy, Gemma's condition is so severe she is not expected to have a long life. She requires strong medication, which makes her drowsy, and a stream of health visitors and carers visit her home.

While Thomson and her partner Bruce, Gemma's father, appreciate the support, they are angry that it has been made clear that once Gemma has recovered, she must resume the schoolday journeys to Aberlour, which caters for children with special needs.

Thomson said: "Social workers claim she is stimulated by having other children around her. But I feel she is at her happiest when I'm around and I give her all the stimulation she needs."

Her mother explained that Gemma can no longer interact with other children in any way. "Before the seizure two years ago, she could see them, and could respond to faces and movement, but now she's lost her sight and can't communicate."

Despite her difficulties, a car is sent for Gemma every morning and a carer has to be assigned to her all the time she is at school.

"The people who made [the decision on schooling] have to listen to parents whose children are exceptionally disadvantaged and understand that for them, the policy might be wrong," said Thomson. "Gemma can't socialise, will never be able to socialise, and really just needs to be kept warm, safe and comfortable.

Her daughter was not comfortable on the car journey, she insisted. She added: "If she had a seizure while she had a cold, it is quite possible that it could kill her. It would be very distressing for both of us if I couldn't be with her at the end."

Angelman Syndrome was recognised by a British doctor, Harry Angelman, in 1965 when he worked with three children who all had a stiff, jerky gait, no speech, excessive laughter and were prone to seizures.

Inspector Rebus author Rankin has confessed that having a child with such a profound disability has driven him on and given him additional impetus to succeed as a writer.

He said: "My son Kit goes to the Blind School in Edinburgh and gets on very well. It's a great school and we feel he gets a lot out of it through being with other kids. There are other benefits too, like physiotherapy and swimming, which are important to keep his muscles working as he does have a chance of walking one day."

Rankin said he could not judge what benefit Gemma received from going to school, but added: "

Angelman Syndrome does have a profound effect on a whole family, and in general I think sometimes local authorities have to listen to parents and accept that they know their children best.

"If parents are willing and able to take on the massive responsibility, emotionally and physically, of looking after their child full-time because they honestly feel that is best for their child, they should have that right."

The council declined to defend its decision saying: "We can't comment on individual cases. But generally speaking, any parent who is unhappy with the education being provided for their child can now make use of the Additional Support for Learners Act introduced in November 2004 and can make representation to the authority. If they don't agree with the outcome of their approach, there is a tribunal system they can appeal to.

"The council feels that every child should be educated in order to achieve their maximum potential, whatever that potential might be."

[Jaysun]

Maybe they could send some material to the mother so that she can attempt to educate her at home but beyond that leave them be.

[politicket]

These same lame-brained public education "initiatives" coming soon to a U.S. school near you...

Has anyone been paying attention to the many states that are wanting to lengthen the age requirements for "education"? These people will stop at nothing until they can get "education" from birth through 18. After all, children need to be "protected" from their parents...

[cricket]

Blind ignorance is particularly repulsive and pathetic; when it afflicts the Liberal. . .educated. . .know-better-know-it-all, government nanny. . .whether in the singular or in the 'collective'.

I hope some compassion and common sense finds it's way to the powers-that-be, so that this child can live in peace.

[SteveMcKing]

Angelman Syndrome... not just rare, but the genetic basis is unusual. Inheriting the 'good' copy of a certain gene from mom or dad (I think dad in this case) does NOT compensate for the bad copy received from the other parent. Only a handful of genes are known to exist this way.

[DuncanWaring]

Maybe they could just leave them the heck alone.

[Aracelis]

You are more right on than you know:

Snip -

"Most cases of Angelman's syndrome can be traced to a genetic abnormality inherited from a maternal chromosome (15). A particular area of genes that should control the production and function of a protein called ubiquitin is either absent or ineffective. A minority of cases of Angelman's syndrome are due to new mutations in this same area of genes." from both Mayo Clinic and Health of Children.

"About 70-75% of cases of AS are caused by spontaneously occurring large common deletions or by paternal uniparental disomy" from asclepius.com.

Here's a graphic demonstrating the defect:

All this aside, if the child has severe respiratory problems to begin with, exposing her to other children will only leave her more vulnerable to respiratory infection. This child is not being abused, and the government needs to butt-out.

[paulat]

I did not know this about Ian Rankin. I have read every one of the Rebus books. The man is a fantastic writer!

[Jaysun]

Maybe they could just leave them the heck alone.

Right. That's what I said.

[SALChamps03]

I agree.

[stinkerpot65]

Every educrat is a thug.