Helping Kieran to "Access All Areas"

Welcome and thank you for visiting Kieran's 'gofundme' page.

Kieran is our 7 year old son, and number 3 of the 4 children in our family. Kieran was born with Congenital Muscular Dystrophy, although we did not know that at the time. Kieran was a very 'floppy' baby but otherwise happy and content. Kieran's physical development throughout infancy and toddlerhood was very slow, although the medical professionals assured us that he would eventually catch up to his peers. When Kieran was still not bearing weight on his feet at the age of 2.5 years we knew he wasn't just a 'late bloomer'. Throughout these years Kieran also had many respiratory problems which resulted in pneumonia and a number of hospitalisations to receive ventilation support.

Finally the medical establishment began to take our concerns seriously and the search for a cause of Kieran's fine and gross motor skill delays and health problems began.
Kieran received a walking frame and orthotics to help him stand and learn to walk independently; he finally achieved this by his third birthday. In an attempt to name his condition Kieran has been subjected to many invasive medical procedures over the years, including lumbar punctures, nerve conduction studies and skin and muscle biopsies, to name but a few.



Kieran has seen numerous specialists both in Sweden (where we were living at the time) and at the Westmead Children's Hospital in Sydney. Unfortunately the genetic cause of Kieran's condition has not yet been identified, although testing is continuing. Based on his clinical symptoms his current diagnosis is a condition known as Congenital Muscular Dystrophy. This is an extremely rare group of genetic diseases (one in a million) which can affect children in a number of ways. For more information please visit the Muscular Dystrophy Association of NSW's web page: http://mdnsw.org.au

Kieran has very poor muscle strength throughout his whole body. He also has hyper-mobile joints, putting extra strain on his already weak muscles as he trys to do things like stand or hold a pencil. His muscle weakness makes it hard for him to do simple things like use a fork or eat chewy foods. Kieran wears AFO's (ankle/foot orthoses) to keep his feet in position and to provide support. He also wears an arm brace to assist his fine motor function.

Kieran is especially susceptible to respiratory illnesses as his weak lungs are unable to effectively clear secretions when he becomes sick with something as simple as the common cold. Kieran's prognosis is uncertain, however history has shown that respiratory problems are the main life-limiting factor in children like Kieran and many children succumb to the disease in their second or third decade of life.

Muscle weakness makes Kieran extremely tired and fatigued when he tries to do the things that most children take for granted. We are finding that this extreme fatigue is causing additional challenges with his learning now that he is at school.