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:

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.

Although Kieran can walk short distances with difficulty, he tires very quickly. He finds it especially difficult on uneven outdoor surfaces, slopes and stairs. As Kieran has out grown his stroller and is too big for us to carry, the decision was made to apply for a powered wheelchair for him (he is not able to independently propel a manual wheelchair). The wheelchair will help him conserve energy for the important things like play and learning and will give him a much larger degree of independence. The picture above shows Kieran 'walking' to school in a chair loaned from the local hospital, just like his older brother and sister!

Kieran's additional needs, which include frequent visits to Sydney for specialists appointments, places a large financial strain on our family. Kieran's condition is progressive and his needs will increase and grow as he gets older. In the future he is likely to need surgery, night-time breathing support and other assistive technology to help him access education. We are also facing the enormous challenge of purchasing an accessible vehicle to transport Kieran, his wheelchair and the rest of the family.

We have just heard that Kieran is eligible for government funding for his very own powered wheelchair and we hope to receive this in the next six months or so. The time has come for us to begin the modifications to our home which will allow Kieran to access our home in his wheelchair and to encourage him to be as independent as he can possibly can.

We are making a funding application through "CareWest" in NSW for financial assistance to build access paths and ramps into the house and to build a modified bathroom that will make toileting and showering much easier for Kieran (and our backs). We are cautiously optimistic that Kieran will be eligible for this funding support. The total cost of the project is approximately $40 000. As a family we are required to contribute 30% of the total cost. This means that, even with government funding, we still need to raise approximately $12 000.

As difficult as we find it to ask for help, without your generosity we will not be able to finance the 30% contribution we are required to make towards the home modifications Kieran needs.

Please consider contributing towards our fundraising goal to help Kieran 'Access All Areas'. Every little bit helps. 

Many thanks from all of our family, and especially from Kieran. X


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Jennifer Clarke 
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