Making a Difference in Australia

Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 31

Making a Difference in Australia
Steve Alderton
alderton[AT SIGN]shoal.net.au

Luke contracted TM in April 2000 at the age of five and half months. Luke is now two years old. He is a quadriplegic and has limited movement of his arms and hands. He has some sensation in his lower limbs. He breaths abdominally. There is some small independent and conscious movement in his legs. (Luke’s story appeared in Volume 4 Issue 2 of the TMA Newsletter).

In April of this year, Luke was in the hospital with a cold. As fate would have it, the Premier of New South Wales, Mr. Bob Carr, was also at the hospital opening a new wing. Ali saw all of the press outside and that is how we had discovered that the Premier was at the hospital. I told Ali that he was very strong on his support for embryonic stem cell research. Ali jumped to her feet and went down to see him. She thanked him for his support on stem cell research and asked if he would like to come up to see Luke; a boy who would likely gain so much if the research was approved. The Premier changed his schedule and came straight up - with about 15 others. He was truly inspired by Luke’s plight and spent nearly an hour talking to us. Since then, we have kept in fairly close contact as we both try to encourage legislation to be passed through the Australian government to have unrestricted research into embryonic stem cells. We certainly appreciate the sanctity of life, but we also see the enormous benefits to society from such research.

A few weeks ago the Premier requested another visit to see Luke, this time at our home. We, obviously, said yes. Anything we can do to encourage exposure to Transverse Myelitis and Stem Cell research will help Luke, and we have a strong sense of responsibility to do that.

The Premier arrived with 30-40 media people and swamped our house -- in a semi-controlled fashion. Luke was a little over-awed, but then settled down to his charming self. He completely stole the show. We told the Premier about Dr. Kerr’s research with stem cells and we showed him Dr. Kerr’s video of the partially-recovered rat following the stem cell injection. We talked to the Premier in front of the media about Luke and TM and stem cell research. We then had a press conference outside where more issues were discussed. The coverage of Luke has been on the four Statewide news stations, national radio several times, and the two local news channels. The story appeared in all of the state newspapers, including front page coverage. Luke’s story also was covered in two local newspapers. In addition to this, both Ali and I were on talk back sessions on radio to push the case.

Ali told the media that our main aim was not to get Luke walking again. She said that the main problem was Luke’s chest, which had limited function forcing Luke to breathe with his abdomen and leaving him susceptible to illness and infection. For every single respiratory illness he has he is hospitalized and requires ventilation. If we could have Luke with a better chest and improved hand function then that would be great; and it would be exceptional to have Luke having mobility of his legs.

It is so important that research into embryonic stem cells be advanced. There is incredible potential in both Adult and Embryonic Stem Cells. Both areas of research must be pursued. This will be the way medicine goes in the future. Ali and I are interested in helping our son, Luke, and everybody else now. We do not want to wait five years. There is too much suffering now. It would be morally wrong for us not to fight strongly for this to happen. It is our responsibility.

Since the media exposure, we have had endless calls from people supporting us, some who have had TM. When the general public sees someone like Luke, it is hard not to be moved, not to be inspired. What is right and wrong becomes immediately obvious; all the other arguments fade away.

The Premier continues to call to check on Luke’s progress and has a picture of Luke on his desk.
The bill went to Parliament in late August. Alison and I went to Parliament on Monday, August 19 with the Premier of New South Wales to give a presentation in support of ESC research legislation. The bill on the use of Embryonic Stem Cells has made it through the House of Representatives with a 75/25 split. This is good news. It is now under a month research review by the senate. It should go through there with a reduced majority, and then it will be law; hopefully, by the end of the year.

We will continue to fight. We realize that if Australia and other countries, like Britain, pass this legislation, then the tide will begin to turn on this issue, and everybody, including our son, will win.

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