GRANNY MAUD, WORKING TO FIND A CURE FOR AHC

The history

Sewing is in my genes on both sides of my family! My mother was a dressmaker, my Paternal Great Aunt was a seamstress at Windsor castle, and several generations have workers of all sorts in the silk industry in and around Macclesfield.  Some of my earliest memories are playing with the contents of my mother’s button box, as she sewed on her treadle.  Over the years I have sewn clothes for family, but my first major quilt was a secret memory quilt for my daughter, made over 22 years from the clothes made for her by both Mum and me. The centre of each flower hides the details of what was made and when.

 

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Many Years ago in the second world war, my Dad was stationed in Iceland. He was one of a group of soldiers lost in a snowstorm in Iceland. He was rescued by an Icelandic family and they became firm friends. Sometime after he returned home, I was born, and in my teens began a pen friendship with Gunny, a girl of similar age in the family.

find a cure for ahc

picture of granny maud’s dad

Picture ;- Dad (centre) with his friend Meyvant, and Meyvant’s son Kristin at their last meeting  1968.

 

It is Gunny’s granddaughter Sunna, who has AHC, (Alternating Hemiplegia of Childhood) for which there is as yet no cure. Sunna is amazingly happy but her condition is extremely debilitating. She has terrible episodes almost every day,- sometimes life threatening episodes.

             

Good day                                                             Bad day                          Nystagmus (eye misalignment)

 

good day

find a cure for ahc

 

The Reasons

 Serious quilting was supposed to be a hobby for my retirement, but having supplied the family, I then had to look for another reason to sew. About the same time, we became aware of the Sunna’s rare illness. For two years I helped to raise funds to find a cure by doing a yearly sponsored cycle ride. The final year was the distance between Lincoln and Reykjavik – over 1700m, but I not like asking the same people every year to sponsor me, so I went back to the sewing, selling what I can at craft fairs, and teaching. This time with my husband’s help, as he enjoys making things with wood. He has also developed an interest in Steam Punk jewellery.

          

Sewing for my Grand daughter                  on my bike                                           craft stall

 2 people, people smiling, people standing, dad, cure

 

Alternating Hemiplegia of Childhood

Alternating Hemiplegia of Childhood, which is one of the most complex neurological disorders known to man, has the prevalence of 1/1.000.000. It incorporates many of the symptoms of other neurological diseases and has so many different elements and symptoms are always changing, that it is very difficult to explain to another person what goes on. One child with the illness may react in a different way to another. It can cause episodes of spasms, paralysis, seizures, and excruciating pain.

It has symptoms similar to:-

Epilepsy (seizures)

Cerebral Palsy (low muscle tone),

Parkinson’s disease (dystonia and muscle contractions),

Alzheimer’s disease (Brain atrophy)

ADHD (behavioural issues)

Autism (Learning challenges)

AHC patients are also cognitively late developed and many are touched with other physical and psychological problems.

All these will benefit from research done to find a cure for AHC.

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

GRANNY MAUD, WORKING TO FIND A CURE FOR AHC

Please read more about AHC here:

www.humantimebombs.com

I also have a facebook page where you can find out more about me, updates and products for sale here:

www.facebook.com/GrannyMaudandtheOldGrump

These are some of my products which are all available to buy now:

MEMORY QUILT FOR DEMENTIA PATIENTS

Gents skulls pocket square

Birds and flowers quilt or wall hanging

Gents Fishy Cravat or Ascot Tie

Blue Skies Cushions

GRANNY MAUD, WORKING TO FIND A CURE FOR AHC