Blog

Laugh for A Cause

As the father of a 7 year old little girl with special needs, I learned early on that a good sense of humor makes the daily challenges easier to manage. In June 2006, my wife and I weren’t sure if we would ever laugh again. We received the devastating news that our precious first born child, Sienna, had a chromosomal abnormality known as Smith-Magenis Syndrome. She was only four weeks old and had just gotten off of the ventilator following open heart surgery. She had had two very large holes in her heart that quickly sent her into congestive heart failure. We almost lost her one day during a feeding when she stopped breathing and turned blue. The heart surgery needed to happen immediately. Little did we know that this would only be the beginning of our long and difficult journey as first time parents. As soon as the geneticist gave us the diagnosis of Smith-Magenis Syndrome, we went to the Internet to find out more information. We had no knowledge or understanding of the syndrome but we knew our lives would never be the same. We were shocked to read that the major features of the diagnosis included self-injury, aggression, significant sleep disorder and global developmental delays along with several complex medical issues. Our hearts were broken and we felt completely paralyzed.

Sienna began intensive speech, physical and occupational therapy when she was three months old. She was significantly delayed in walking, talking, and other areas of development. With a lot of work and a lot of determination, Sienna has come so far since then. She currently attends first grade at Sunset Lakes Elementary in an inclusive classroom with the support of a 1/1 paraprofessional. She loves school and it seems as though everyone in the community knows Sienna. We call her the Mayor because she is always introducing us to new people! Sienna is surrounded by a tremendous amount of love and support. She is a sweet, loving, funny and bright little girl.

However, we still have a long journey ahead. Some of the typical behaviors seen in SMS have manifested themselves. She has frequent tantrums that often include some form of self-injury. It feels as though we need to walk on egg shells around her because a meltdown can and does occur at any moment, often for seemingly benign reasons. These unpredictable, erratic behaviors can make daily activities very difficult, sometimes even impossible.  There is no guidebook or map for how to address the complex issues associated with the syndrome. For this reason, we began the Smith-Magenis Research Foundation. It is the first Foundation ever established that focuses 100% of it’s funds towards the support of research.

The SMS Research Foundation supports research to improve the knowledge and understanding of Smith-Magenis Syndrome. Our ultimate goal is to develop viable therapeutic options so that we can tap into the great potential that lies within every individual with Smith-Magenis Syndrome. Since our first fundraiser in 2010, we have given $200,000 to SMS research. Every dollar raised goes directly to our cause. This is important because very little government funding goes to rare disorders. When you support the SMS Research Foundation, you can feel good knowing that you are contributing to a population of people who would otherwise have no hope. You truly are making a difference in the lives of these families.

Over the past seven years, we have had many difficult days but we have also had so much to celebrate. We have redefined ourselves and our expectations for our family. Laughter is the best medicine and it is one of the many joys we have been able to add back into our lives since that dark day in 2006. No matter what challenges we all face, there is always something to smile about. That’s why we want you to join us at our 2013 fundraiser, A Night of Laughter at the Improv, Hard Rock Hotel and Casino on November 13th at 7pm. We have an amazing evening of fun planned: great comedy, and awesome raffle prizes make it easy to help raise money for an important cause. Get your tickets, become a sponsor or make a donation at www.smsresearchfoundation.org. We thank you for your support!

Author: Dan Longman

0