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Dear Amelia

A letter to my daughter........

To My Dearest Amelia,

I love you so much it hurts. I will always love you.

Every single person in this world has been given a life. Rich or poor, happy or sad, long or short. People are born with different coloured hair, eyes and skin. Their country, their family members and society contribute to the person they become.

From the moment you turned 4 months of age you were special. You were happy, affectionate and social. You made people smile. As you grew older things started happening to your body. It was more difficult to do things and self manage daily tasks. I cannot comprehend what it is like to lose brain cells and struggle…

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 Bare With Me

We have a daughter that constantly says "I want to be a normal girl" at the moment. She consistently watches other people do everyday activities that she would LOVE to join in with. She will look at us with tears in her eyes and plead with us to stop the A-T that is ravaging her body.

Articles of Interest

Ataxia telangiectasia: a review

The diagnosis of A-T is usually suspected by the combination of neurologic clinical features (ataxia, abnormal control of eye movement, and postural instability) with one or more of the following which may vary in their appearance: telangiectasia, frequent sinopulmonary infections and specific laboratory abnormalities (e.g. IgA deficiency, lymphopenia especially affecting T lymphocytes and increased alpha-fetoprotein levels).

Making a child's every second count

Amelia has Ataxia-Telangiectasia (A-T), a rare and incurable disease described as "the worst parts of cerebral palsy, muscular dystrophy and cystic fibrosis". A-T attacks the brain, leading to loss of muscle control, weakened immunity and an increased risk of cancer. Pneumonia is an ever-present threat.

When Parents Start Companies to Cure Their Children

For years, Brad Margus has juggled two goals as chief executive: Make money, and find cures for his children. He just co-founded a startup, Exigence Neurosciences Inc., in part to seek treatments for his two sons who have ataxia-telangiectasia, or A-T, a rare progressive and eventually fatal neurological disease.

Resources

Wobbly Feet Foundation

Wobbly Feet was created to provide education, an internet-based support group, and financial support to medical researchers and families dealing with Ataxia Telangiectasia (or A-T).

A-T Children's Project

Established in the United States in 1993, the A-T Children's Project is a 501c3 nonprofit organization that raises funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding life-improving therapies and a cure for ataxia-telangiectasia (A-T).

Action for A-T

Action for A-T uses the money it raises to fund vital research into the rare childhood condition Ataxia Telangiectaisa.

AT Society

Our vision - A world where no one need suffer from the devastating effects of A-T.

BrAshA-T

Determined to do something about their situation, the Roebigs created the charitable foundation called BrAshA-T to raise money to support research into finding a cure and as a means for creating a support network for other families dealing with A-T.

Amelia's Project

Amelia's Project began on Facebook after Amelia was diagnosed in December 2010. My name is Amanda and I am Amelia's mum... I would like to share our journey.

Mkingston719's Blog

Not only does the average Joe have no idea what Ataxia- Telangiectasia is, but thousands of doctors have never even heard of it either.

NORD

Ataxia telangiectasia (AT) is a complex genetic neurodegenerative disorder that may become apparent during infancy or early childhood. The disorder is characterized by progressively impaired coordination of voluntary movements (ataxia), the development of reddish lesions of the skin and mucous membranes due to permanent widening of groups of blood vessels (telangiectasia)...

StatPearls

Ataxia telangiectasia (A-T), also known as Louis-Bar Syndrome, is a rare genetic form of early-onset autosomal recessive ataxia. The clinical picture is characterized by a combination of neurological and systemic symptoms due to the mutation of the ataxia telangiectasia mutated (ATM) gene. In particular, the disease is characterized by cerebellar atrophy with progressive ataxia, cutaneous telangiectasias, higher incidence of malignancy (particularly lymphoid malignancy), radiosensitivity, immune deficiency, recurrent sinopulmonary infections, and high levels of alpha-fetoprotein in serum.