About us - The Full Story

Part 1

What is AHC?

Alternating  Hemiplegia of Childhood 

What does this mean?

AHC is a rare neurological disorder in which repeated, transient attacks of hemiplegia occur, affecting one side of the body or the other, or both sides of the body. The hemiplegia (paralysis of a portion of the body) ranges from simple numbness in an extremity to full loss of feeling and movement. The attacks may last for minutes, hours or even days and are normally relieved by sleep. The attacks of hemiplegia may alternate from one side of the body to another.

Our young friend Sunna, is 15, she was diagnosed with AHC when she was 2, and she has all these symptoms.

Imagine living with this, or being the parent of a child with this disorder.

Part 2

AHC (Alternating Hemiplegia of Childhood) is caused by a mutation of of the ATP1A3 gene. Research is taking place in several institutions, mainly in America, but it will be some time before there are any concrete results. At this time, AHC would still be considered a “new” disorder due to its relatively recent diagnosis. 

There is no proof that the disease is fatal or shortens life expectancy is any way, but sufficient documentation is not available at this time. There is developing evidence that AHC may cause ongoing mental and neurological deficits with a progressive course. 

The causes of hemiplegic attacks differ among children. High stress activities have been know to cause attacks as well as the presence of a cold or upper respiratory problems. Children are affected by bright lights, wind, temperature changes and exposure to water. Many attacks occur for no apparent reason.

Sunna  is a smiley happy teenager, she enjoys school when she is well enough to go, but constant episodes sometimes cause loss of motor or mental capacity. She has an excellent team of carers, but Mum and Dad have given up their stressful jobs  to be with her at home. Not knowing when, or why an episode might occur must be the hardest stress to live with.

Part 3

 Do you ever have a feeling that you are here for a reason?

This family is my reason.

Here we have three generations of one family, nearly two thousand miles away in the North Atlantic. Sunna, her Mum and her Grandmother. I have never met Sunna, have only met Ragga as a young girl, but Gunny has been my penfriend for nearly 60 years.

Why then are they so special? Because they are links in a chain that goes back a further two generations to the days of the second world war, and that story is for another day.

But for today, Sunna has Alternating Hemiplegia of Childhood, and if you have been following the story this week you will know that there is no cure. There are not enough other children like her to make the drug companies take interest, and research is expensive and takes a long time.

Which is where I come in - I spend my time making quilts, cushions and other household goods, and sell them at craft fairs to raise the money to help to fund the research and increase awareness. Covid has not been kind to fundraisers so  I have moved on line, but it is a struggle.

Part 4

Today we are back in the second world war, Hitler has entered Norway, and his largest battleship in hiding in the fjords.   British troops are sent to Northern Iceland to protect the vital shiping routes of the North Atlantic

In Akureyri , while on a training trek one platoon is beaten by the bad weather and several men lose their lives to the cold. One soldier is found by a young man looking for the family sheep and takes him back to the farmhouse saving his life.

That soldier was my father!

He returned to England, and as regular soldier, remained on active service until 1947. The following year I was born. He and his rescuer, Meyvant, remained friends unto many years after the war. The two old men  last met in 1968. It is his granddaughter Gunny who is my penfriend, and Gunny's granddaughter, Sunna, who has AHC

So in a way, I am paying back what they did for my family – after all without them I would not be here!