- K
- I
Nothing prepares you to be the parent of a child with Angelman Syndrome, a rare disease impacting 1 in 15,000 people.
Every day is incredibly challenging. We work so hard to help our kids achieve the smallest gains, which we celebrate with great gusto.
The challenges families face include seizures, lack of speech, trouble sleeping, difficulty walking, fine motor coordination and learning.
Yet despite all the obstacles and associated grief, our children find ways to amaze all the time. They are vibrant, cheeky, inquisitive, sensitive, caring, funny and so full of potential.
Sarah and I fundraise for Angelman Syndrome to realise that potential. Researchers are closing in on reversing and reducing the impacts of this rare disease in the laboratory. Funds we raise go to further that work, so that our child and the children of so many others may live with less daily challenges for the smallest things and may have greater opportunities.
To this end, Kane is running his third marathon on the third continent. This one is on Sat 23 November 2019 in Myanmar. Hot, humid and sandy.
Whilst tough (for the runner and the supporting family), it’s nothing compared to the challenges faced by an Angelman Syndrome family.
We appreciate all donations to further the research that could literally changes the course of ours and so many others.
We acknowledge that that many may have donated to previous marathon attempts of kane’s, and we thank you . We continue to raise money and ask for support as the research for a treatment is progressing but not yet in our hands.... as such until one is available our challenges are ongoing.... thanks in advance for your generosity and continued support of our son and this community.
Kane and Sarah
Every day is incredibly challenging. We work so hard to help our kids achieve the smallest gains, which we celebrate with great gusto.
The challenges families face include seizures, lack of speech, trouble sleeping, difficulty walking, fine motor coordination and learning.
Yet despite all the obstacles and associated grief, our children find ways to amaze all the time. They are vibrant, cheeky, inquisitive, sensitive, caring, funny and so full of potential.
Sarah and I fundraise for Angelman Syndrome to realise that potential. Researchers are closing in on reversing and reducing the impacts of this rare disease in the laboratory. Funds we raise go to further that work, so that our child and the children of so many others may live with less daily challenges for the smallest things and may have greater opportunities.
To this end, Kane is running his third marathon on the third continent. This one is on Sat 23 November 2019 in Myanmar. Hot, humid and sandy.
Whilst tough (for the runner and the supporting family), it’s nothing compared to the challenges faced by an Angelman Syndrome family.
We appreciate all donations to further the research that could literally changes the course of ours and so many others.
We acknowledge that that many may have donated to previous marathon attempts of kane’s, and we thank you . We continue to raise money and ask for support as the research for a treatment is progressing but not yet in our hands.... as such until one is available our challenges are ongoing.... thanks in advance for your generosity and continued support of our son and this community.
Kane and Sarah