Dear Friends and Members,
At the annual general meeting for the Ontario Rett Syndrome Association on August 19th, I will retire as president after 25 years serving on the board of directors. I would like to take the opportunity to express my sincere appreciation and to share a few final thoughts.
On November 9th, 1989 my husband, Dean and I heard those horrific words “Your daughter has Rett syndrome”. Like many parents at that time, we had never heard of this devastating rare disorder. There were only a few articles published on Rett syndrome in 1989. There was no internet to research it or to connect with other families. I did reach out to the Canadian Rett Syndrome Association by phone quite quickly. Two months after Kayleigh’s diagnosis, I was invited to attend a meeting with three other moms from Eastern Ontario and the executive director from the Canadian Rett Syndrome Association (CRSA). At this meeting, a local Ottawa/Cornwall Chapter was developed and somehow I became president. As a chapter president, I automatically became a board member for CRSA. I quickly met other parents from across Canada and Ontario who were board members. Within the first year on the board, it became evident that an Ontario Rett Syndrome Association was needed so provincial goals could be addressed. I was proud to be a part of the group that created the Ontario Rett Syndrome Association twenty-five years ago. In 1994, with great sadness, the Canadian Rett Syndrome Association was dissolved. The cost of operating a federal association for a rare disease was truly impossible. Each provincial association agreed to work together even if CRSA had to fold. To continue the provincial work, O.R.S.A. grew stronger and evolved at a rapid pace. I have been privilege to be a participant in this growth. My role on the board of O.R.S.A. in the early years was to operate the resource centre from my home and to be the support to families.
Through the past 26 years, I have had the pleasure of speaking to and meeting hundreds of families from across Canada. It has been an honour to be the first point of contact for many parents who had a child newly diagnosed with Rett syndrome. I have watched families grow stronger and rise up to the challenge to support and care for their family member with Rett syndrome. I have also shared in the deepest of sadness when a child with Rett syndrome has passed away. Each time I received the difficult phone call from the parents, my heart broke a little more. It is by meeting all of these families, I have found my own strength. Thank you to every family for allowing me to be a part of their lives. You and your children have been an inspiration.
Words can never express the gratitude I have for the researchers, physicians and medical professionals that I have gotten to know and have worked with over the years. There is no doubt these are a special group of individuals. They go beyond what is required of them. Their dedication to our children and to O.R.S.A. is unique and is absolutely appreciated. I am honoured to call many of them a colleague and a friend. I have to give a special thank you to Dr. Patrick MacLeod and Dr. Peter Humphreys. Dr. MacLeod has been a guiding force for O.R.S.A. He has also been the doctor who gave Dean and I hope when Kayleigh was diagnosed with Rett syndrome. His calm devotion and caring nature made us know our daughter was in safe hands. I will forever be grateful for his friendship and guidance. Dr. Humphreys became Kayleigh’s neurologist many years ago. He patiently listened to my continued request that he develop a Rett syndrome clinic in Ottawa. When it was the right time, he shared with me; he was ready to begin this process. With the support of O.R.S.A.’s board of directors, Dr. Humphreys and I met with the administration of CHEO and a clinic was established with O.R.S.A.’s financial support. That was over ten years ago. In time, two other Rett syndrome clinics opened up in Ontario. This has been a dream come true for me.
I also would like to thank all those who served on the Eastern Ontario Chapter executive committee and the association’s board of directors. For 18 years, I served as EO chapter president. We worked long hours hosting local
event such as the Mothers Retreat, workshops, the annual family BBQ, volleyball tournaments and as an Ottawa Dragon Boat chosen charity. Together we made a difference locally and became friends while volunteering.
I wish to extend my gratitude to those who have served with me on O.R.S.A.’s board of directors. As a working board, there is a great deal of dedication required by all board members. As president, I have seen the sacrifices each of you have made. It may have been time away from your family, your work, or your personal life. This has not gone unnoticed by me. Together we have accomplished so much for a volunteer charity. Many of you have become close friends and I truly cherish each friendship. I hope we will stay connected in the future.
I cannot finish without expressing my since appreciation to my family. Dean has been beside me throughout this journey. His support has been steadfast for 26 years. He took care of our children so I could volunteer away from home. The amount of trips to CRSA and O.R.S.A. board meetings are too many to count. I could not have given as much as I have without his support. Our children, Brekyn and Parker, have also been a great help. Many times in the younger years, they were busy collating photocopied articles, parent packages, and conference folders. They allowed their mom to miss important events in their lives so I could help others. They welcomed families into our homes without any objections. My mother, Dean’s parents and our extended family members have also been a support assisting with the chapter’s family BBQs, conferences and volunteering at many fundraising events over the years. I cannot express how grateful I am for my family.
There is only one other person to thank. This is my daughter Kayleigh. This year we will celebrate her 29th birthday. She has taught me so many life lessons. The greatest is how to live with a neurological condition. When I was diagnosed with Multiple Sclerosis in 1998, I used Kayleigh as my example and dug deep to accept and move forward. Her grace, determination, and unconditional love have been my strength in trying times. I am so in awe of her each and every day.
Volunteering within the Rett syndrome community has been a great joy and passion for me. I leave the board of O.R.S.A. very proud and content. I encourage those who have not given time to this very determined and dedicated charity to do so. New board members, committee members, and volunteers are always needed and very appreciated. As a volunteer, you will receive more than what you give.
I will spend the next year as past president (without voting privileges) and chair of the Governance Committee. My role is to be available to mentor the board when requested and to support the new president, Kevin Morton for one year. I remain for a period of time as the representative for O.R.S.A. on Neurological Health Charities Canada (NHCC) membership committee and the Province of Ontario Neurodevelopmental Disorders (POND) Parent Advisory Committee. I am excited to see what new ideas and growth lay ahead for O.R.S.A. I will be their loudest cheerleader.
Therefore, in closing, the words thank you seems not enough. Please keep in touch and know that you and your families are forever in my hearts.
Ontario Rett Syndrome Association President