By Cern Basher
This is an update to the "About Dane" page. The first About Dane page can be found here: About Dane (Kilimanjaro climb)
My son Dane was born over ten years ago and this amazing journey still continues. He is still the same happy boy he's always been; just a lot bigger! His touch is still gentle. He still freely gives hugs to caring family, friends and even strangers. He still tries to swipe food from other people's plates. He still loves to get a workout in by watching cartoons and sports on television. He still loves to swim and ride horses. Yet, he is still climbing his mountain. He is still learning to walk and learning to feed himself. He works on these basic life skills everyday.
Everyday, and in some small way, we are all climbing mountains. Most of us aren’t actually lacing up our boots and scaling high peaks. Yet, we and our 22q13 / Phelan-McDermid Syndrome children are all scaling the steep slopes that life has put in our way. We are all facing the strong headwinds from medical issues, schools, and the challenges that life throws at us. And, we are all taking steps into an unknown future. We are all climbing our own mountains.
Although most of us don’t actually climb mountains, everyone can relate to the challenges that mountain climbers face. We’ve all felt hardships, discomfort, fear and extreme fatigue. Anyone parenting a child with special needs has dealt with all of these. Climbers wake up day after day and attempt to make some forward progress towards the summit. They don’t know what hardships they will face, yet they know they will face them. They rely on their training and the support they have from their team.
In many ways our 22q13 Support Group is such a climbing team. Anyone who has been to the biennial conference knows this. Anyone who posts to the Yahoo page knows this. Anyone who has spent time with another 22q13 family knows this. The 22q13 team continues to make progress in assisting the 22q13 families and their children.
Yet, as a team we’ve really just left base camp. We have so much more ahead of us. There are more families around the world to connect with and help. There are more physicians to educate. And, there’s more research to be done. Perhaps there are future treatment options that will really help our children. How will this happen?
Well, we are responsible for changing the course of our children’s lives. No one is going to do it for us. It is literally in our hands to make the dreams we have for our children come true.
In 2007, our team climbed Kilimanjaro, the highest mountain in Africa and the world’s highest volcano. Climbing Kilimanjaro was a dream of mine for a long time. And, I’ve got to tell you that achieving dreams is a very satisfying thing! It was also very satisfying to help raise awareness of Phelan-McDermid Syndrome and raise a little bit of money for the 22q13 Deletion Foundation.
Not all of my dreams, however, have been achieved. My son, Dane, is still climbing his mountain. The effects of the deletion impact him in so many ways, but he bravely faces his challenges each and every day. He hasn’t reached the top of his mountain and I haven’t either. So, our work isn’t finished.
To me, mountains are the perfect metaphor for our extended family that is the 22q13 Support Group. We are all scaling a similar mountain. Every one of us, whether we live in the US, Canada, Australia, New Zealand, France, Germany, Italy, Ireland or any of the other 239 countries in this World - we all face so many of the same challenges. I believe that we can use this metaphor to our advantage, as it helps people around the world understand our situation.
So, let’s come together and conquer another mountain. Let’s further raise awareness of Phelan-McDermid Syndrome and raise money for the 22q13 Deletion Foundation. Let’s raise enough money so that the foundation can continue doing the work already begun and continue to expand the work we all desire to see."
 |
| Dane - Post Kilimanjaro climb - June 2007 |
 |
| Dane standing watching a video! - June 2007 |
 |
| Dane has a day named after him by the City of Montgomery - June 2007 |
 |
| Dane working very hard and having fun - July 2007 |
 |
| Photo shoot with Mom at Xavier University - July 2007 |
 |
| Dane can never get enough kisses from Mom - July 2007 |
 |
| The perfect pair! |
 |
| Standing strong |
 |
| Dane gets to know an Irish Wolfhound - Sept 2007 |
 |
| Dane hugs his Nana - Dec 2007 |
 |
| Dane was the ring bearer at Mandy and Kurt's wedding - June 2008 |
 |
| Dane turns nine - Kiri shows him a present - July 2008 |
 |
| Dane hangs with Dad - Jan 2009 |
|