Raquel Interview

Townsend Music School interviews Raquel Gebel about piano.

I interviewed Raquel at this weeks lesson.  I steered clear of any Wolfram Syndrome questions because I wanted it to be about piano.  I will ask her about Wolfram later, though.  She says it doesn’t bother her at all to talk about it.  Again, what a  strong, brave little 12 year old girl she is.  She is simply awesome.

Here is the her interview.

 

I also have been asking students to make short videos asking people to donate to The Snow Foundation.  Here is Emily.  Raquel and Emily are best friends since a very young age.  Emily is the student who sent Raquel to me.  This is an outstanding clip.  I just basically turned the camera on without warning and asked her to say something.  It is just amazing.

 

Raquel was very good and was much more sure on “Pieces”.  We still didn’t get to any new other material as I had planned.  Hopefully, there is no rush.

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Continued Progress at Townsend

Please donate.  Even $5.00 makes a difference.  $10, $15, $20, whatever you can afford to help cure a 12 year old girl.  How about $1000.00?  If you knew her, you would donate.  A cure for Wolfram Syndrome will lead to a cure for diabetes.

We are working on rhythms on “Pieces”.  Raquel has trouble with keeping the eighth notes even when the left hand comes in on the first and third beat.  A common problem.  I think I should steer her back to the beginning books to more gradually develop her skills.  We will continue with “Pieces”, though.   She just loves it and it is what motivates her.  She also loves “Someone Like You”.  I want to let her do mostly what she wants to do at this point.  I think she will agree to do some more simple pieces to develop the hands together, but she can certainly work on that with the more difficult pop pieces.

I feel rushed in that I want her to learn those pieces she likes while she can still see the keys.  I want her to enjoy everything we do, but it is difficult to teach that way.  So I am torn between letting her do her pieces and spending more time on basics.  I would like to work on theory because it would help her a lot, but there just isn’t time.  Even though we do 45 minutes, it seems to fly by.

Raquel is such a sweet girl, so easy going and never complaining.  Never bemoaning her condition.  I ask her questions now and then about her condition, and she is so patient and nice about it.  She takes the time to tell me and doesn’t ever seem annoyed that I am probably the 100th one to ask any particular question.

I hope I don’t come on too strong, trying too much in her lesson.  It comes out as if I am impatient, I think.  It’s not that I’m impatient.  It’s just that I feel like there is a deadline we have to meet.  The deadline of when she cannot make out the notes on the piano anymore.  I just hope and pray that she will be patient enough with herself and the piano when that happens.  It will be more difficult, but I know she can handle it.  There have been and are plenty of blind pianists.  There is a huge list on Wikapedia!

Last Week, Scheduling Problems, Sickness. This Week, 2 Lessons.

Stephanie, Raquel’s mom, was out of town last week, and it ended up Raquel was also sick.  She had a terrible migraine and very upset stomach.  I don’t know if that is all related to Wolfram, but any sickness is worse I would imagine.  I hoped she could come two times this week, and that’s what happened.

On Tuesday, the 23rd of May, Raquel came in with a horrible cold.  I feel so sorry for her, as I would for any student.  She had less energy, and was obviously not feeling as good as usual, but she wouldn’t admit it.  I asked her how she felt and she said fine.  Like I keep saying, she is tough.

She played pretty well Tuesday, but when she came in yesterday, Friday, she sounded great. Despite not being able to practice much, she looked and obviously felt much, much better.  The lesson was so much fun.  I enjoyed it more than ever because Raquel seems to be opening up more to me.  It always takes a few weeks or months for that to happen. And with a 12 year old, sometimes it never does.  So I am pretty ecstatic about this.  I believe it makes the lessons much more fun for the student and certainly for the teacher. Raquel has some great stories she has already told me about herself.  When I find things out about a student, many times I can pick out some music that the student would really like.  Furthermore, she’s having an easier time learning.  She’s beginning to know the notes on the piano better and is moving around on the keys much, much better.

Here I am, being long winded again.  Oh, well.

Raquel won a chick at a school raffle,  and I guess bought 2 more.   Anyway, she has 3 chicks now.  She had a ball with them.  I found out she loves horses and rides, too.  And when I found out she loves dogs, I told her I would ask Mrs. Smirl to rap on the door before she left so Raquel could meet Melody.  (Melody is Mrs. Smirl’s little 5 pound dog that she brings to the studio.  Melody never bothers anyone, never making a sound or mess!  She is also hypoallergenic!)  Raquel loved Melody, and kept going on and on about how cute she is after Colleen (Mrs. Smirl) left.

So, “Pieces” is sounding good and she is learning and memorizing a line each week.  She is also doing “Someone Like You”.  She knows a little of the intro right now.  This is trememdous progress in such a short time!

Kentucky Derby

Over the weekend Stephanie took Raquel to the Kentucky derby where they had a fundraiser. Very successful! There are some pictures on The Snow Foundation’s Facebook page.

At her lesson it was another wonderful 45 minutes with Rachal. I hope she enjoys her lessons as much as I do!  We went back over  the section that leads to the chorus.   I think she has it pretty firmly in her mind now.

Stephanie told me that Raquel was kind of sad because school was getting her down.  It’s just not easy when you can only see a couple of feet ahead. You can’t even recognize your friends But in the lesson she showed no signs of  sadness at all.   She is such a tough little girl.   She just tucked away her sadness for the time during her lesson.

Please donate.  Tell them Townsend sent you.  $5.00 would help.  Or $10.00 or $20.00.  Whatever you could afford.  Just go to the donate page of Thesnowfoundation.org.  You can use Pay Pal or write a check. You can drop it by our school.  But just $5.00 from everybody would amount to so much!

I may put up a little video, but I need to edit.

May 6, 2017

Please make a comment.  I welcome any suggestions to make this blog better, more interesting, and more likely to stir someone to want to donate as much as possible.  I would like to get people to donate just $5.00, $10.00 or $20.00,  or as much as $1000.00 or even more!  Is it possible?  I know, absolutely, in my heart and mind, that for Raquel alone it is worth donating that amount!  Even with her current situation, she is still able to give off such a positive aura.

SINCE WOLFRAM SYNDROME IS A FORM OF DIABETES, A CURE FOR WOLFRAM IS A CURE FOR DIABETES!!!!!

I hope this isn’t too schmaltzy!  It’s just my deepest feeling, which is a very disquieting to be divulging over the internet!  (Is it too much?  Have I gone overboard)?  Well, I would do anything to rid the world of this insidious, life sucking disease!

Thing that really matter ….
Finding how to restore the optic nerve is what matters.  Stopping the progression and finding a cure is what matters.  The Snow Foundation is trying to do all of this.  And there has been tremendous progress.  IT CAN BE DONE. 

I am feeling desperate about this because it has to be done very, very soon.  Raquel needs something right away.   It seems to me that Wolfram is moving at a much more rapid pace with Raquel than average.  Her sight is almost gone at 12.  That is usually when Wolfram sufferers BEGIN to lose their vision.  She is about 6 years ahead of schedule by my calculation.  And 60% of Wolfram victims do not live past 30.

Donate as much as you can to The Snow Foundation.  Go to their donate page.  While you are there, sign up for Amazon Smile.  Every little cent matters.  And it adds up.

May 3, 2017

Raquel 5-2-17

Raquel at her lesson May 2, 2017.  She was a little tired, but still what a nice smile.  And what a good sport.  She comes in and the first thing I ask is if she minds if I take her picture again!  If she is ok with it, I will do this every week!

Raquel had a good lesson yesterday.  I always look forward to seeing her!

We got to about a third of the way through “Pieces”.  I gave her sheets with the letters written on them again for those pages.  It’s very difficult for me to write notes that way.  It’s so strange.  It should be easy, but going back and forth transferring from the regular notated music to sheets with the letters is somehow confusing.  Probably just for me.

Raquel seems to pick up on everything I tell her.  So far, she can do whatever the music has called for.  She is getting better with hands together, and sounds so much more confident.

Teaching her is so rewarding!

Raquel Gebel at the Piano

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.

 

4-25-17

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 4-25-17 pic
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.

 

4-21-17

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.

cropped-raquel-learning-mary.jpg

Here is another video of us working Mary Had A Little Lamb and “Pieces” by Rob Thomas

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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.

Sincerely,

Tim Townsend

Director
Townsend Music School