Help Us to Find Our Kids a Voice; Genetic Disorders Rett Syndrome and Fragile X Are Little Known or Understood by Most of Us. but They Are Only Too Real for the Families Who Are Confronted with a Diagnosis. Amanda Keenan Meets Three Parents Who Are Learning to Live with Their Child's Condition as They Each Gear Up for the Bupa Great Edinburgh Run to Raise Awareness

Daily Record (Glasgow, Scotland), September 4, 2012 | Go to article overview

Help Us to Find Our Kids a Voice; Genetic Disorders Rett Syndrome and Fragile X Are Little Known or Understood by Most of Us. but They Are Only Too Real for the Families Who Are Confronted with a Diagnosis. Amanda Keenan Meets Three Parents Who Are Learning to Live with Their Child's Condition as They Each Gear Up for the Bupa Great Edinburgh Run to Raise Awareness


EUAN SWEET, 36, FROM EDINBURGH WHEN teacher Euan Sweet noticed his son wasn't developing as quickly as other children his age, he thought it was just a phase and nothing to worry about.

But a chance visit to the doctor confirmed that three-year-old Oliver was suffering from a rare genetic condition called Fragile X. Euan explained: "At first we just thought he was a little bit slow with his development.

"We took him to the doctors, thinking that everything would be OK but then a blood test revealed that he has Fragile X. "My wife Dawn and I were both left in shock as we had never heard of the condition before and were told it will affect his development and learning."

Six months on from the diagnosis the family are trying to come to terms with Oliver's condition.

Euan said: "He cannot speak at the moment but can communicate with sign language, which he has just started to learn.

"He's picked it up really fast. We are also learning but Oliver is much better at signing than my wife and I. "We are still waiting to find out if he is autistic, too, as Fragile X has links with autism and behavioural difficulties. There are a variety of symptoms that he can develop throughout his life and we don't yet know what the future will hold.

"Right now our focus is on attending speech therapy and physiotherapy with Oliver in the hope both can help."

Euan is also taking part in the race and hopes to raise funds to pay for more research into Fragile X. He added: "If it can help in any way then I am willing to do it.

"This is a relatively new medical condition and scientists and medics are still learning about it."

? To donate to Euan's campaign, log on to https://mydonate.bt.com/fundraisers/euansweet1 STEPHANIE GALBRAITH, 22, FROM PENICUIK EACH time Stephanie Galbraith sees her daughter looking at pictures of her dad she is filled with sadness.

Brooke's father David was killed by a bomb in Afghanistan when she was just four years old.

Then, a year later, Brooke was diagnosed with a rare degenerative illness known as Rett Syndrome, which means she struggles to communicate. One of the few words she can say is dada, which she repeats every time she looks at pictures of him.

Lance Corporal Kirkness was 24 when he died and although he and Stephanie had split, they remained close for Brooke's sake.

Stephanie said: "He had such high hopes for her future and he was killed before we discovered she has Rett syndrome.

"Now I don't know what kind of future she will face. Each day is a struggle.

"I want her to remember her dad. Thankfully, dada is one of the few words that she can say."

Now six, Brooke struggles with things many of us take for granted. Her mobility could one day be affected and there is no sign of her speech fully developing.

Stephanie explained: "It's very difficult and she gets frustrated easily, which leads to hysterical crying fits.

"I take each day as it comes but I worry about her future. She might need round-the-clock-care."

Despite being born perfectly healthy, Brooke struggled to learn to walk and her limited speech left Stephanie so concerned that she contacted her GP.

Blood tests confirmed Rett syndrome.

Stephanie said: "We were still trying to come to terms with the loss of Brooke's dad.

"She also struggled with not being able to see her dad any more and that was just so sad. To help her come to terms with his death I've put up pictures of them together on her bedroom wall. See looks at them often - it is important that she remembers her dad. …

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Default project is now your active project.
Project items

Items saved from this article

This article has been saved
Highlights (0)
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

Citations (0)
Some of your citations are legacy items.

Any citation created before July 30, 2012 will labeled as a “Cited page.” New citations will be saved as cited passages, pages or articles.

We also added the ability to view new citations from your projects or the book or article where you created them.

Notes (0)
Bookmarks (0)

You have no saved items from this article

Project items include:
  • Saved book/article
  • Highlights
  • Quotes/citations
  • Notes
  • Bookmarks
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited article

Help Us to Find Our Kids a Voice; Genetic Disorders Rett Syndrome and Fragile X Are Little Known or Understood by Most of Us. but They Are Only Too Real for the Families Who Are Confronted with a Diagnosis. Amanda Keenan Meets Three Parents Who Are Learning to Live with Their Child's Condition as They Each Gear Up for the Bupa Great Edinburgh Run to Raise Awareness
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Full screen

matching results for page

Cited passage

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited passage

Thanks for trying Questia!

Please continue trying out our research tools, but please note, full functionality is available only to our active members.

Your work will be lost once you leave this Web page.

For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

Already a member? Log in now.