One year ago today was the worst day of our lives. It was the horrible day that we received the news that Anna has Tuberous Sclerosis. At that time we had never even heard of this disease that now is a part of our everyday life. We have spent this past year learning as much as we possibly can about Tuberous Sclerosis. We have been to millions of doctors appointments, enrolled Anna in a clinical trial at Boston Children's Hospital, and asked doctors who specialize in this disorder hundreds of questions. I remember first learning of the diagnosis and learning that Anna may never crawl, walk, talk, and had a 60% chance of being autistic. She could have renal failure, lung failure, severe skin manifestations, or even a brain tumor that causes death. It was all so overwhelming to say the least.
Overall, we have had the best year we could have hoped for. She had one horrible grand mal seizure in December, but aside from that she has been completely seizure free. In this past year Anna has learned to crawl, stand, walk, she understands everything we say and has a repertoire of 10 or so words. She does not display any signs of being autistic. She is completely on track developmentally and we are so very proud of her. She is a happy little girl who loves to read books, play with her big sister, dress up as a princess, and of course eat!
These days my tears are shed more often because I feel oh so lucky that Anna is doing so great developmentally and not because I can't accept the fact that she has Tuberous Sclerosis. We know how lucky we are that she is doing so well. There are many other children who suffer uncontrollable seizures - even hundreds per day. Some of these children have had multiple brain surgeries to no avail. We are so very thankful that she is on track developmentally and doing as well as she is. We are also very acutely aware that this could all change in a heartbeat. Seizures could return at any time for her and she faces a big challenge coming in May when she will start weaning from her current medication due to potential side effects. For now, we continue to take it one day at a time. And I try as best as I can to not worry about what the future will hold for Anna and her health.
Our annual walkathon to raise money for the Tuberous Sclerosis Alliance is June 16th in Washington DC. We are walking because it is the only thing that we can do to help Anna fight this disease. This cause is so near and dear to our hearts and we want to raise as much money as possible for continued education and research regarding Tuberous Sclerosis. Thank you to all who have given us so much love and support this past year. And thank you for any contributions made. We also welcome any family and friends who want to come and walk with us. We would love to have you by our side!
I urge our friends and family to visit my fundraising page at the following link:
http://my.e2rm.com/personalPage.aspx?registrationID=1418722&langPref=en-CA
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