|US President Barack Obama met Dusty Brandom, 18, |
at the White House in Washington, D.C., recently.
Obama jokingly said that he would love to join the
expedition to climb Mount Kinabalu.
— Picture courtesy of Catherine Jayasuriya
Read more: Obama backs climb to highlight disease http://www.nst.com.my/nst/articles/13duch/Article#ixzz1UfOkDQk4
She said Obama came to know about the climb when she and her Duchenne-afflicted son, Dusty Brandom, 18, met him at the White House recently.
The meeting with Obama was made possible by the Make-A-Wish Foundation, an organisation that grants wishes for terminally-ill children in the US.
Catherine, a singer, songwriter, author and photojournalist, said the expedition came up in their conversation when Obama asked them what they had planned for the summer.
"My son told the president about our Mount Kinabalu expedition to raise awareness about Duchenne and he (Obama) jokingly said he would love to come and that he wanted to hear all about it," she told the New Straits Times.
She said Obama spoke of his passion for travelling to exotic places and showed a keen interest in her heritage as he browsed through a book on Borneo, which she had presented to him along with a sompoton, a traditional musical instrument from Sabah.
She said as he flipped through the book, he stopped when he saw an image of Mount Kinabalu.
"The president was pleased to know about the expedition and wished me the best."
Duchenne muscular dystrophy is one of the most common devastating genetic childhood diseases and affects one in 3,500 boys worldwide.
Boys and young men with Du-chenne face progressive muscle wasting that robs them of their ability to walk, breathe, eat and speak and eventually takes their lives, often before they reach the age of 20.
Catherine said the disease did not affect the mind of the afflicted, citing Albert Wong Kit Ming of Kuala Lumpur, who graduated with a law degree last year.
"I know that on Sept 9, as I climb Mount Kinabalu for my son and for all those with Duchenne, I will reflect on my meeting with the president, and on some of the inspiring words from his speeches."
She is here to make preparations for the expedition.
About 15 people, including five employees of Aston Martin in Singapore and a woman athlete from Sabah, will join the expedition.
Catherine, the daughter of Malaysia's former high commissioner to Canada, Tan Sri Thomas Jayasuriya, said she chose Mount Kinabalu for the expedition because it spoke to her of strength and endurance.
"Like an anchor, the mountain reminded me of where I was from and kept drawing me back, guiding me through some difficult years while I was away from home.
"Throughout life's ups and downs, the mountain remained the same, and so did a certain part of me. It reminded me that despite the changes that life brings, there are things that stay the same."
Brandom will flag off the participants. at Timpohon Gate.
"My son will watch from his wheelchair, as we climb Mount Kinabalu in honour of him and all boys and young men who suffer from Duchenne."
Read more: Obama backs climb to highlight disease http://www.nst.com.my/nst/articles/13duch/Article#ixzz1UfNxwLbn