Lily had such an amazing birthday. The entire school was excited for her birthday. Even the janitor wished her a happy birthday when we walked through the front door that morning. She had the best day ever – dancing and eating cake with her friends, teachers, therapists and parents.

When she got home from school, we opened her awesome presents and then went to dinner at one of her favorite places – Playa Betty, with Mommy, Shamekia and Stephen!

The next day I took her for another birthday present – a haircut! She’s been obsessing over bangs and medium length hair so we went to Marco down in Soho for a new look!!!

It was only fitting given the recent poem she wrote about her birthday…

AND we raised close to $6500 for Rett Syndrome Research!!! Thank you to all who donated and helped make my kids birthday so very special.


Lily’s turning seven!

On February 8th, Lily is going to be seven years old.  In honor of her upcoming birthday and my unwavering desire to obliterate Rett Syndrome, I am launching our second annual fundraising campaign. A generous (and anonymous) donor and I have committed to matching up to a total of $1500 raised on her RettGive.org page between today and the 8th.

I’m so proud of this kid – she literally smiles in the face of adversity. I see it every day when she’s struggling to stand, walk or breathe.  I see how hard she works to do – well – almost anything.  I pray for the day when Rett Syndrome will be just a painful memory.

For those who have already donated… from the bottom of my heart, thank you! Your support and love is palpable.  For those who’ve not gotten around to it yet, or don’t feel that giving $10 or $20 will make a difference, believe me when I say that every dollar counts.

Lily is the bravest, sweetest, smartest, hardest working almost 7 year old that I know. And I know that one day in the near future she, and her Rett sisters and brothers, will be cured.  But without funding, it will remain a pipedream.

Until that day happens, I will continue to fundraise and advocate and fight. For her.

Heartening news on the research front

For those of you who have donated to Rett Syndrome Research Trust and wondered where your dollars are going, read this heartening article about two pioneering scientists who have just joined our mission to obliterate Rett Syndrome – BECAUSE OF PEOPLE LIKE YOU.
And as a reminder….”Rett is not neurodegenerative and preclinical research has shown that the disorder is dramatically reversible once protein levels are restored. Thus, therapeutics … have the potential to provide profound benefit and potentially cure Rett Syndrome.”
For those who haven’t yet donated, click here to support groundbreaking scientific research so that Lily and her Rett sisters can be rid of this shitty disorder.
Thank you.
Lily crimp

Fiercely determined, and beautiful.

Four years in…

Tomorrow is D-day.  The day four years ago when we got Lily’s Rett diagnosis.  I remember it like that recurring bad dream that you just can’t shake.  The worst dream – actually – you could imagine having about your child.  Unfortunately it was our reality.  It is still our reality.

I naively thought/hoped that by now, there’d be a cure.  No one made me that promise, but it was a piece of hope that I held onto as the science – even four years ago – seemed so promising.

Today, four years in, I’m living in that in-between space.  I can’t have too much hope nor can I have too much despair.  Every few weeks I hear positive news about how much closer we are to a cure.  Every few days I hear about another Rett girl dying.  So I try to walk around with blinders – shutting out the hope and the despair, living in the now.  And some days, this trick actually works.

But enough about me.  How is this impacting Lily?  She will be seven years old in a few weeks.  Cognitively she’s all there.  But her body is at war against her.  And this is taking its toll.  I see it in her eyes – she has SO MUCH she wants to tell me.  She has SO MUCH to say.  And she is SO FRUSTRATED.  I’m grateful for the Tobii and her therapists – because of them we have a window into her thoughts.  But this is a very high-level window.  We know how she feels, how she’d like her hair to look, how much she knows about the weather and the date and the time and the book that she’s reading.  We know that she has a very silly sense of humor.  Trying to have an in-depth two-way conversation with her, however, proves to be elusive.  ‘Lily, WHY are you sad?’  ‘Lily, WHAT exactly hurts right now?’ ‘Lily WHY do you keep talking about monsters?’  These are some of the questions that just can’t be answered.  At least not yet.

Lily desperately wants to be a ballerina. But there are some mornings when she can barely keep her feet under her.  She desperately wants to play with other kids.  But only once – yes ONCE – in almost seven years have I seen neurotypical kids look to actively engage with her.  Once.  It was at my aunt’s birthday party last year and these sweet kids (who were complete strangers about Lily’s age) came over and asked to play ‘Rock, Paper, Scissors’ with her.  Even though I had to do hand-over-hand and we lost terribly (I still don’t fully understand those rules), she had the best time ever.  I cried.  They were mostly happy tears.

I tell her every day that she can do whatever she sets her mind to.  I tell her every day that she is the bravest, hardest working, smartest, silliest, prettiest almost 7 year old that I know.  That second sentence is truth.  The first sentence I desperately want to be true.  I am basically willing it into existence.

My ask to you is this: if you were thinking of getting Lily a birthday present, the best present you can give right now would be to make a donation to Lily’s fundraising page for the Rett Syndrome Research Trust.  I don’t care if it’s $5 or $5000.  Help me will her cure into existence.  The science is so promising.  And if I take my blinders off for a moment and try to bask in the hope, I’m pretty sure that by the time she’s 10, there will be a cure.


Lily told her speech therapist yesterday (using the Tobii) that she wanted crimpy hair today.   She was quite pleased with the result!







An almost visit to the ER

I’ve said this before and I’ll say it again: Rett Syndrome is no fucking joke. Even for a relatively healthy and high-functioning girl like Lily.

Even though her team of caregivers and I actively manage her food intake and output, she still gets terribly backed up from time to time. Last night, however, was exceptional. She was in so much pain and was trying so hard. None of my standby tricks worked.

It was a tough call to make – do we spend the night in the hospital or do we ride it out at home? I’m so grateful to have a plugged in network of Rett moms to turn to in moments like these. And also so grateful to have had Shamekia the nanny (soon to be nurse) on hand with me for much of it. Stephen was on standby. And John came over to drop off supplies from the pharmacy. I felt very supported. But also very scared. And helpless. It’s in moments like these that I wish I went to medical school. I made the right decision last night to stay home. But that might not always be the case.

Thankfully Lily woke this morning with a smile (we finally had some success unclogging her late last night). She’s the most resilient person I know. She’s my hero.

Passing out on me last night after a tough few hours.

Scenes from a snow day

As you know, the east coast was hit with quite the storm. Lily and I hunkered down and did our best to enjoy her day off from school.

We played dress-up, read books, watched movies and even went outside for a nanosecond. She doesn’t like the cold or the snow. She too must be a Floridian at heart like her momma.

Winters are not easy for Rett girls. Not only is it more isolating than usual, but also they struggle more with their health. Peeing, sleeping, breathing and eating have become concerns again in this house. For the most part, she’s staying positive. But she’s had more than a few moments of feeling miserable and sad. I’ve seen many more tears than usual these past few weeks.

We are both trying to keep our spirits up. It’s not so difficult to do as we are heading to Florida to visit our family next week. We are both excited to feel sun on our skin and sand under our feet. And of course see our relatives!!!

Stay warm.

Asking you to take action…

Hello everyone who wants to Reverse Rett,

On Wednesday 10/25 a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman and Nick Offerman participated in a PSA video and many more will be part of a social media campaign. Several celebrities turned their clothes inside out and backwards to commemorate Rett’s reversibility.

The PSA video is scheduled to be published on AccessHollywood.com which is amazing but it’s up to all of us make sure this campaign makes waves.  For a preview of the video, check it out here: rettgive.org/reverserett.

There are 3 things we are asking everyone who wants to cure Rett to do on Wednesday.  

  1. Share the celebrity video on every social channel you use. Include this link rettgive.org/reverserett and #ReverseRett in your post.
  2. Post a photo or video of yourself, your family and/or your loved one with Rett wearing clothing backwards on every social channel you use.  Suggested copy to accompany your photo or video: “I/we want to #ReverseRett so Lily can [insert a goal – talk/do cartwheels/breathe normally/etc.]. Join me? Here’s how: rettgive.org/reverserett.”
  3. Ask everyone you know who has supported Rett to join in.

I will also email a link to the video to all of you once it’s live.

If you cannot do these things on Wednesday, then do it on Thursday.  Better to post late than not at all.

Let’s Make Rett History!


C & L


Eat. Sleep. Cure Rett.  Will be sure to wear our shirts backwards on October 25!