One little girl’s steely resolve to raise awareness and bring about a cure for a rare and relatively unknown disorder is touching the hearts of many. Maddison Parker – or Maddy as she likes to be known – is only nine years old yet she has already achieved more than many do in a lifetime.
Maddy’s mission is to both raise awareness and bring about a cure for a condition both she and her sister Kayla, who is six, live with. It’s an extremely rare condition known as Ehlers–Danlos syndrome (EDS), an inherited connective tissue disorder that results in a collagen deficiency.
Collagen acts like ‘glue’ throughout the body and a deficiency results in extremely loose joints and sensitive skin. It affects ligaments, eyes, organs such as the stomach and heart and blood. It causes hyper mobility in the joints which means that they can dislocate from any minor movement, as often as twenty to thirty times a day. Even simple tasks that most of us take for granted such as rolling over in bed, putting on a jacket or turning a doorknob can result in dislocation and debilitating pain.
Living with EDS has meant that Maddy can’t participate in the normal rough and tumble of the playground, however it has never stopped her from getting involved. Although hard on her shoulders and fingers she has learnt the violin and loves playing it. She refuses to let the condition get the better of her. Her courage and tenacity has been acknowledged; this year Maddy was recognised for bravery and service at the Pride of Australia Awards receiving the Child of Courage Medal.
When Maddy discovered that May is Ehlers-Danlos Awareness month she wanted to get involved. However she quickly realised that there were no campaigns happening in Australia – it was a condition completely overlooked by the media. Maddy set about to change all that.
She wrote her letter to the world – a message to raise awareness, to let people know that this condition exists and how it affects the daily life of those living with it. Maddy then posted this letter on Facebook. And already she has over 1000 likes. She has written to Prime Minister Julia Gillard and was thrilled to receive a reply.
Maddy has also uploaded her own message to You Tube which you can see below.
Maddy’s next plan is to organise a national Ehlers–Danlos Syndrome awareness day, further raising the profile of the condition and generating funding for a cure.
This Thank You Thursday the Fish Chick would like to acknowledge Maddy for her bravery and determination to make a difference. Well done and best wishes Maddy!
See you in the pond,
The Fish Chick