Sue Frecklington bigger versionLincoln, England-based Sue Frecklington had always loved quilting, but it wasn’t until a close friend’s granddaughter was diagnosed with AHC that her hobby took on new purpose. She started her quilting company Granny Maud and the Old Grump to raise funds to find a cure for AHC, an extremely rare genetic disease. But the mission of her business, and her desire to help her friend’s grand daughter (and their family in general) spans generations. Sue’s English father met this Icelandic family during World War II when they saved his life – and the two families have stayed in touch ever since. Now, generations later, Sue wants to repay the favor. 

Frecklington’s story, as told to The Story Exchange 1,000+ Stories Project:

I make quilts and cushions bags and other fabric goods which I sell to raise funds to find a cure for AHC an extremely rare genetic disease.

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. 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. We still keep in touch. Unfortunately, Gunny’s granddaughter Sunna, was diagnosed with a rare illness known as AHC (Alternating Hemiplegia of Childhood) for which there is not yet a cure. Sunna is amazingly happy, but her condition is extremely debilitating. She has terrible episodes almost every day – sometimes life threatening episodes during which her muscles lock. 

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. So I began fundraising and grew my hobby into a small business. Each year I sent what I had raised to AHC Association of Iceland to help raise awareness and fund research. 

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

Alternating Hemiplegia of Childhood, which is one 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 so 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.  AHC patients are also develop late cognitively and many are touched with other physical and psychological problems.  All this has had a devastating effect on family life. It is hoped that a cure will be available by 2024, but gene therapy will cost £1.76m. I will feel successful when  we have a cure for Sunna and the other suffers, and there is no need for further fundraising.

One of my biggest successes was being published last Autumn in Quilt Now, one of the main quilting magazines on the market. As a result I was one of ten who won an exclusive day with Stuart Hillard, a well known quilter and author, at the Janome School of Sewing in Stockport. Under his instruction we completed a project of his design using fabrics he designed. We were given several ‘goody bags’ by various quilting supplies. It was a great day to remember and the day was featured in a more recent magazine. 

My word for the year is TECHNOLOGY. I am of a generation that had no knowledge of computers and all that goes with them. So much business development seems to take place on the internet and I struggle with most of the social platforms that I should be using. I tend to get frustrated and upset when I cannot make things work as they should, when others find them so easy. So I am trying to learn how to use the various social media sites to increase awareness of the illness and sell my products.

Chrissie Lowery of the Cuddle Bed company is one of my role models.  She has developed her business because of her children’s problems, and she has a determination to succeed despite being a single mum with health problems. She manages to find time to move her business forward while at the same time spending a lot of time helping others to develop their own businesses.

Instagram       @grannymaudandtheoldgrump

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