Please watch the following videos before reading my blog. They will be enlightening and will make my content more interesting!
The Snow Foundation video
Stephanie Gebel’s race to find cure and save her daughter.
April 29, 2017….supplemental blog.
I went to my doctor of 35 years for a checkup a couple of days ago and told him about Wolfram Syndrome and Raquel. I have talked to the many doctors that I know, and like them, he had never heard of Wolfram Syndrome. I told him about the vision loss, the hearing loss, and all of the other problems including the fact that most Wolfram patients don’t live past 30 years old. He responded by saying very quietly but emphatically, “Don’t expect that!” He said that just a few years ago a child with (and then he named a condition I can’t remember) was not expected to live very many years, maybe not to live at all. Now these kids are living well into adulthood and are expected to live longer and longer. Amazing breakthroughs are always occurring. There’s a very good chance they will find something to help Raquel.
As his patient, I have never known him to be wrong about anything. I didn’t quite expect such an impassioned response, but he clearly believes in the strong possibility of a cure.
I already believe and know that they will find something to stop the progression of Wolfram and then find a cure. I believe it very strongly. But to hear it from a fine doctor that I hold in the deepest respect was, to say the least, encouraging.
It also makes clear the need for more funding for the research that is going on at Washington University which The Snow Foundation is funding. They need the funding urgently. Most people have never heard of Wolfram, so you can imagine the problems in getting donations.
Please tell your friends about Wolfram Syndrome. Post about it on your Facebook, Twitter, or wherever you can. And make a donation.
I brought some sheets with large letters I printed and Raquel was able to read them! This is great! She can practice at home now and be sure she has the right notes. She seems to be very excited at the prospect of playing “Pieces” with Emily at our next recital. Another wonderful lesson with Raquel. As far as I can see, there has been no frustration. It is such a huge advantage to have a student with such a positive attitude. Below is a short clip of the lesson which shows how she has to lean up close to read the letters. I know I keep saying it, but The Snow Foundation needs donations NOW!
Raquel Can Read The Letters! The kinds of research being done could stop the deterioration of her optic nerve and maybe even restore her eyesight.
I am so excited to be able to be doing this vlog. I only hope that it will raise awareness about Wolfram Syndrome and will help, in some very small way, to find a way to stop the progression of this disease. I believe every individual makes a difference, so please join me in this fight to save and or restore Raquel’s sight, hearing, and eventually save her life.
I am getting to know Raquel a lot better, and the more I know her the more I am inspired by her. Her friend Emily came to the lesson, and it was one of the most rewarding piano lessons I have ever given. Raquel worked so hard without a break all the way throughout the lesson, which ran 10 minutes over the 45 minutes we were supposed to have. She now has learned “My Shadow” & “Mary Had a Little Lamb”, both with two hands, and has a good start on her favorite song, “Pieces” by Rob Thomas. (It’s a great song)
At this point, Raquel will play “Pieces” as a duet with Emily. We will have to figure out an arrangement. I was told they had a sleepover together that night after the lesson, and they were at Raquel’s keyboard for hours. I can’t begin to tell you how rewarding that is to me.
Here is a video with a few excerpts from our lesson.
Here is another video of us working Mary Had A Little Lamb and “Pieces” by Rob Thomas
4-17-17 My experience teaching piano to Raquel so far.
Raquel has Wolfram Syndrome, an insidious, horrible disease that is quickly taking away her eyesight. It will eventually take her hearing from her, and it will keep taking and taking from her. Wolfram patients average lifespan is 30.
When I first met her, I would never have known anything was wrong with her if Stephanie, her mom, hadn’t told me. Our waiting room is a wide hall, but with someone sitting in a chair, sometimes their legs are out into where people walk. She came in and went down the hall to the rest room. She stepped aside someones foot, moved very self assuredly, and just seemed like any other kid.
She is doing very well with a few beginning pieces that I taught her. I showed her how to finger scales and she proceeded to play a scale all the way up the piano. That is very impressive from a beginning student.
Raquel is an inspiration. I am in awe of her strength. She never complains, she has a beautiful smile, and she always wants to learn more and play more. We are both disappointed when her lesson ends.
I am so very proud to be Raquel’s teacher. My student, Emily, who is Raquel’s good friend, told Raquel about me and recommended me to her. Thank you, Emily!
Finally, thanks for visiting our vlog about Raquel. We appreciate it so much. Thank you for caring about music. And thank you for caring about Raquel.
Townsend Music School