I know it’s going to seem like I’m trying to catch lightning in a bottle again. And, I am. And yes, we’re aiming high, here. But, anything worth having is worth asking for. For Maggie, everything is worth fighting for.
The text of the letter is as follows:
Dear President Obama,
I saw that you commuted the sentence of 214 people this week.
But you forgot 1.
This is Magnolia.
She’s imprisoned in a body that does not work.
Because she has Rett Syndrome. A rare neurological disease that affects mostly girls.
Girls, that could have been just like your daughters.
Magnolia cannot walk easily, she cannot speak, and she cannot use her hands.
Rett Syndrome has locked her potential away.
But science has proven it is curable.
The NIH underfunds Rett Syndrome Research
Because it does not affect a significant population of Americans.
But it could eradicate a disease that affects hundreds of thousands.
With enough funding, you can commute my daughter’s sentence.
Will you consider commuting one more sentence by directing the NIH to focus on a cure for this curable disease?
Will you save my daughter’s life and the 350,000 other girls like her?
Will you Be Magnolia’s Hope?
Please share this video.
A share can truly change the course of my daughter’s life.
Dear Mark and Priscilla,
It feels odd to be writing to you in this way. Then again, I can’t imagine a better forum to connect with you then the one you dreamed up in your room when you were in college.
First and foremost, warmest congratulations on the birth of your daughter, Maxima. I know very well the tremendous love and joy that comes with a newborn daughter.
I can only imagine the number of letters you have received from worthy causes since the announcement of the Chan Zuckerberg Initiative. I hope, through the power of the internet and the social network you created, this message reaches you in time.
I have a daughter – Magnolia, age 5 – and I’ve been advocating on her behalf for a cause that aligns very closely with two of your stated goals. You see, my daughter suffers from a severe neurological disorder called Rett Syndrome. It is not hereditary. It can happen to anyone and it impacts 350,000 girls and women and their families worldwide, dramatically. My daughter cannot speak. She cannot use her hands effectively. She has difficulties walking and breathing. That said, she is considered mild on the spectrum of Rett Syndrome sufferers because she can still eat, she does not have heart deficiencies, she has not yet experienced debilitating seizures, and she is not in a wheelchair. She requires 24 hours a day maximum assistance in everything she does, but she is mild on the spectrum of Rett Syndrome. Think about that.
When you announced the Chan Zuckerberg Initiative two of your stated goals were to cure disease and enable personalized learning.
Rett Syndrome has become popular in the genetic research community as its cause is known, specific and symptoms have been proven in animal models to be completely reversible. That’s another thing to think about – Completely Reversible. If you can help us, you can fix 350,000 women around the world and their families.
Rett Syndrome is pacing to be the first curable brain disorder. In a recent issue of Psychology Today, they confirmed as much: https://www.psychologytoday.com/blog/hormones-and-the-brain/201603/curable-brain-disorder
The Rett Syndrome Research Trust (RSRT) is an organization dedicated to funding groundbreaking research to eradicate this debilitating neurological disease.
Here are five reasons why the Chan Zuckerberg Initiative may find RSRT a relevant cause to support:
The words you wrote in your beautiful letter to Maxima – The only way that we reach our full human potential is if we’re able to unlock the gifts of every person around the world – resonated deeply with us. We often say that girls and women with Rett are locked in bodies that don’t work.
We hope you will consider learning more about Rett Syndrome. I’ll be happy to introduce you to Maggie or the Rett community. I think if you were willing to meet some of the girls suffering from Rett Syndrome, you would realize how dramatic an impact it is on their lives and how dramatic a change you could have on their futures. The Chan Zuckberberg Initiative can make a tremendous impact on our mission to make Rett history.
I wonder if when you were dreaming of Facebook, you knew how much it would change the world, how we interact, how we share, how we communicate. I wonder that because when I dreamed of having a daughter, I had no idea how she might change the world. But now I know. I know she will be a part of the eradication of Rett Syndrome. I hope you will be too.
Thank you for your time.
dad to Magnolia
Please share this post.
Rett is an ever changing mystery – and it’s one we’re constantly trying to solve. Any little thing could be a clue to helping her with some of her symptoms. We obsess over it – just trying to do everything we can to help her.
When a doctor suggested we get her allergies checked we agreed it’d be a good idea. Though she exhibits no symptoms of allergies, that is typical of girls with Rett. They may have broken arms and exhibit no symptoms. Their pain receptors are typically high and their bodies don’t let them respond to injuries in the same way as you or I would. So, we thought allergies might take a little bit of guess work out of some little piece of the mystery. And then we got the results:
She’s allergic to everything! Well, everything except MSG. We talked to the doctor to see if there could be a mistake and he didn’t think there was. He thought it was unlikely she’s actually allergic to any of the things that came up barely over the limit in these charts, but it still made sense to avoid them. So we tried it. For two weeks. And she did not like it one bit. She screamed and yelled constantly – which is completely out of character for her. Maybe somehow all this stuff bound together to protect her?
We’re pulling her out of this diet and hope we can manage it without being crazy. But if we do go crazy, at least you’ll be able to solve the mystery.
For the longest time the letter s was important. It was how she said yes with a long extended “s”. It was how she hissed like a snake. It was how she responded to Brown Bear Brown Bear what do you…? “ssssss”. It was the one sound she’s been able to call upon consistently since she started talking and then lost her words.
Today I realized that that too is all but gone. Maybe she was just having an off day, but it’s been harder and harder for her to make the sound for a few months now. Today, she just stared at me when I asked with her eyes welling up with struggle. She mustered an “f”, and I told her good job, before I had to leave, lest my eyes well up too. She used to count with me and do the ABCs. Now, she’s left with “f”s and “p”s.
Though recently our speech therapist started using a technique called Prompt and at the same time we started on yet another supplement – Coq10 and all of a sudden Maggie’s been making all kinds of noises. There’s a longer list of supplements and therapeutic interventions we’re yet to try, but if this is the result, we’re going to try them all. Eventually there will be a treatment. And when there is, she’ll be able to say “s” again.
I don’t expect her to use her words until we can find a treatment or a cure. But it was always nice to hear them, even if they were really just letters. Now I’m content just to be able to hear her voice.