Turning 3 with Peppa Pig and Friends

Last week we celebrated Alexandra’s 3rd birthday with a home full of friends and family. (Photos below)… It was a day filled with special moments and lots of laughs and smiles. Even though I had dreamed that she would be walking by this date, I am okay with the fact that she is making PROGRESS. Even one year ago she was no where near where she is today. She has learned to use her safety reflexes, she is learning her PODD communication system and starting to find her voice, she received a Tobii Dynavox speech generating device with eye gaze and has taken to it so well. She is starting to eat more solid foods and has been able to chew and swallow meat…this skill has taken a long time to learn. She is also so CLOSE to mastering the pincer grasp and that will be huge when picking up food. She can clap, high five and shake your hand like the polite little human that she is. She can take assisted steps and can stand on request from a sitting position, wow! She is continuing to strengthen her arms and shoulders and can stay in a four-point position longer than ever before. She has continued to develop her sensory processing skills and is doing great with loud noises, lights, movement and textures. In fact, she loves most textures…from slimy, to squishy, to soft, to bumpy, to hard and more! Her favorite is the “lotion” sensation…as she will never shy away from a good leg/foot massage or “yogurt hands!”

Below are some pics of her beautiful day… all Peppa Pig themed. Peppa Pig was the first cartoon she really took to…now she adores her. Alexandra will hear the opening music and whip her head around so fast to check out the television. She laughs at appropriate times while watching and she has even memorized some episodes and will start humming along to her favorite songs the characters sing, right on cue. IT IS INCREDIBLE. Needless to say, we think she enjoyed her party and celebrating with some of her friends. A highlight of her birthday party was when she was able to participate with her friends in the “pin the hat on Peppa” game. With assisted steps she made her way to the wall to pin the hat on! Check out the video below.

On Facebook I posted:

To my Alexandra, three years ago, you…our little shining star were brought into the world…a happy and healthy 7 lbs. 15 oz bundle of joy. Being your “mama” has taught me so much in these three short years. I have learned to never take one thing for granted, even the smallest little thing. I have learned patience and acceptance of things we cannot control. I have become stronger and weaker all in the same breath. I am strong for you, yet I fall to moments of weakness when I see others do the unimaginable, walk and talk. You have taught me lessons I never knew I needed to learn. I am grateful for the joy and clarity that you have brought our family. We know what matters most in this world and what doesn’t anymore. Your little “voice” causes us all to take notice and long for the days when we get to hear it again. Your strength is unlike anything I have ever witnessed before as you must spend your days observing the world swirl around you. Thank you for allowing us and trusting in us to be your arms and legs and your voice until you find your own. We will continue to move mountains for you so that you can stand tall on top of them. Thank you, sweet darling, for all the ways you have made our family stronger and love deeper. Happy 3rd Birthday Baby Girl! WE LOVE YOU!

I Am a Grandmother

Written by Cheryl Almond

I am a grandmother,
of a nonverbal grandchild who speaks with unencumbered gestures,
delightful smiles and ear piercing squeals.

I am a grandmother,
of a grandchild that can not stand or walk on her own
but moves with emotional intent.

I am a grandmother,
of a grandchild that cannot make choices as quickly as most.
But revels in her successes!

I am a grandmother,
of a grandchild that lights up a room with her smile and quiets a
gallery of voices when she has something to say.

I am a grandmother,
of a warrior who gives it her all when asked to do things
that take her to new heights.

I am a grandmother,
of a grandchild that sees me, smells me, touches me, with her eyes,
nose and hands that only a child with a keen understanding of
unconditional love can embrace.

I am a grateful grandmother,
of a beautiful masterpiece that makes me so much more
than I thought I could ever be.

Her name is Alexandra.

Pitt Hopkins Syndrome Awareness Day is September 18th, please consider giving a donation of any amount to help fund critical research for Alexandra and the other children living with PTHS around the world. Thank you so much!


Please list “Alexandra Anderson” in the field titled “In honor or memory of.”

Governor Ducey Proclaims Sept. 18 as Pitt Hopkins Awareness Day in Arizona

In a state with a population of nearly 7 million residents, there are currently only four children diagnosed with Pitt Hopkins Syndrome in Arizona. Matt, Alexandra and I have had the great fortune to have met each of these amazing children and their families — and on multiple occasions too! This year we have exciting news to announce… Governor Ducey has officially proclaimed September 18th as Pitt Hopkins Syndrome Awareness Day in Arizona! We are beyond thrilled that his office accepted our proclamation proposal and that he understands the importance of raising awareness for this incredibly rare disease.

The Pitt Hopkins Research Foundation annually celebrates September 18th as International Pitt Hopkins Syndrome Awareness Day to raise awareness and funding for research and this date was chosen to bring attention to the fact that it is a disorder caused by a spontaneous mutation on the 18th chromosome.

ducey-smallArizona joins several other states that have also successfully proclaimed September 18th as the official day for PTHS awareness, they include: Alabama, Florida, Illinois, Iowa, Missouri, New Jersey (Township of Mantua), Pennsylvania and Texas. Congratulations on achieving this historical milestone! As of the date of publication, the following states are in the process of finalizing their proclamation request: Colorado, Connecticut, Georgia, Michigan, Minnesota, North Carolina, Ohio and Orangeville-Ontario, Canada.

You can find the Governor’s full proclamation below:

WHEREAS, Pitt Hopkins Syndrome is a rare and severe neurological disorder caused by a spontaneous mutation or deletion of the TCF4 gene; and

WHEREAS, Pitt Hopkins Syndrome is characterized by intellectual disability and developmental delay, breathing problems, recurrent seizures (epilepsy), and distinctive facial features; and

WHEREAS, approximately 700 people worldwide have been diagnosed with Pitt Hopkins Syndrome,

WHEREAS, The Pitt Hopkins Research Foundation annually celebrates September 18th as International Pitt Hopkins Syndrome Awareness Day to raise awareness for Pitt Hopkins research, and this date was chosen to bring attention to the fact that it is a disorder caused by a spontaneous mutation or deletion of the TCF4 gene, located on the 18th chromosome; and

WHEREAS, The Pitt Hopkins Research Foundation is dedicated to finding a cure for Pitt Hopkins Syndrome through research, education and advocacy.

Now, THEREFORE, I, Douglas A. Ducey, Governor of the State of Arizona, do hereby proclaim September 18, 2017 as Pitt Hopkins Syndrome Awareness Day and encourage all citizens to increase awareness and understanding of Pitt Hopkins Syndrome.

For those that have not joined her Pitt Crew, we ask that you reconsider. Alexandra and her Pitt “brothers and sisters” around the world need your help. There is no cure for Pitt Hopkins. The effects of this disorder are devastating. Can you imagine life without ever speaking? Never being able to say you love someone? Or never hearing your child say she loves YOU? I can’t imagine it, but we will soon. This is our baby girl’s future that she faces. But with your help, a cure is possible. I just know it. Help us fund a cure. Please help us go #beyondawareness and donate today.


The Arizona Pitt Hopkins kids catch up at one of their “Pitt Party” gatherings. Also joining in the fun were two Pitt mamas from Utah and Kansas!


Pitt Hopkins Awareness Day 2017 Governor's Proclamation

I Am the Child

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much . . . whether you are happy or sad or fearful, patient or impatient, full of love or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards . . . great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable . . . I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. if you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am not just the disabled child.”

I am Alexandra. 

(author unknown)

Spotlight Interview with Theresa Pauca, Co-Founder and Vice-President of the Pitt Hopkins Research Foundation

Interview by Whitney Smith from CDD, June, 2017. Original source here.

“I think that right now there seems to be a really big push into research on rare diseases. All the rare diseases are collectively getting together and saying, “Hey, we’re here!” – combined together they make one big common type of genetic disease category. I think this is the day and age of rare diseases.”

Theresa Pauca
Co-Founder and Vice-President, PHRF

Theresa Pauca is a co-founder and Vice President of the Pitt Hopkins Research Foundation. She has a B.A. in Psychology from the University of North Carolina at Chapel Hill, and a Masters of Arts in Teaching from Salem College. Theresa has been a Vice Chair of the Corporate Board for Smart Start of Forysth County, a Project Coordinator in Child Development at UNC-CH, an Instructor in the Department of Education at UNC-CH, and a Public-School teacher in Regular and Special Education. Theresa and her family live in Winston-Salem, N.C.

Whitney Smith: Today we’re here with Theresa Pauca, co-founder and vice-president of the Pitt Hopkins Research Foundation (PHRF).  I want to thank her for joining us today to talk about the Foundation and the important work that they are doing in to support research into this rare and neglected genetic disease.  Hi, Theresa!

Theresa Pauca:  Hi! Thanks for having me.

WS:  Absolutely.  Could you tell us a little bit about yourself and your family?

TP:  Yes.  So, we live in Winston-Salem, North Carolina.  Before I worked for the Foundation, I was the project coordinator for a child development grant at UNC, Chapel Hill.  I’ve also been a regular ed.  elementary teacher and a special ed.  elementary teacher, which has been very helpful with my son.  Now, I’m working pro-bono for the Foundation as the vice-president, and also coordinating care for my son, Victor.

WS:  Could you tell us a little bit about Victor and his journey?

TP:  Yes.  Victor is 12 years old.  He’s our third child.  We have two older daughters—Sofia who’s 18 and Francesca who’s 15, who are neuro-typical. My husband is Paul Pauca.  He’s a very involved dad, wonderful person, and he’s a computer science professor at Wake Forest University.  I had a normal pregnancy, and when Victor was born I noticed that his facial features were just slightly different then our girls.  He had kind of a bridge on his nose already and I thought ‘Oh wow.  He has his daddy’s nose.’ But it ended up being a little different than that.  He was a beautiful baby, but he started not reaching his milestones.  That was the first indication that there were some issues.  He often kept his hands fisted.  He wasn’t sitting up.  He couldn’t play with his toys as well as a typical child.  He was, always, though, very engaged with us—very lively, really interested in what we were doing and smiled a lot, and babbled a little bit too.  So, we felt very encouraged by that.  But around six months old the pediatrician said, ‘Let’s watch and wait a little bit’.  Which I was actually really kind of grateful, because we tried not to worry about things and enjoy him being a baby.  But really at about 9 months he still wasn’t able to sit up very well.  He was kind of beginning, but he would fall back a lot, so he recommended for us to see a physical therapist.  So, we did, and started working on some of his motor skills, which weren’t super behind—in the end, he was very fortunate with that.  He did end up taking his first steps right at two and started walking when he was two and a half—which is actually pretty early for a child with Pitt Hopkins.  But after that though, they recommended that we see a geneticist and a neurologist and then we began our journey of trying to find a diagnosis for Victor.

At first the neurologist thought he might have Angelman Syndrome, which actually presents very similarly to Pitt Hopkins.  But we did some tests when he was two and a half, in 2008, and the first test, a microarray analysis, came back negative.  This test was sent to Signature Genomics in Washington State.  Then they were so nice, because within a couple of months they had doubled the number of diagnostics sites that they had identified for Pitt Hopkins, and so they offered to retest his sample for free.  When they did that and found a deletion on his 18 chromosome that included the gene TCF4.  Then our geneticist called us and told us that this indicated that he had Pitt Hopkins Syndrome.  So that was in 2008 when he was two and a half.  There was no organization on the web anywhere for Pitt Hopkins at the time because it had only been identified in the Netherlands in 2007.  It had been clinically identified in 1978 in Australia with Dr. Pitt and Dr. Hopkins, but no molecular diagnosis until 2007 in the Netherlands.  And then in the US right around 2008 when Victor got his diagnosis.

WS:  If I could ask a quick question:  even though there was no support organization for the newly found Pitt Hopkins at the time, were there any support organizations for you as parents or the families for the fact that your child had a rare and neglected genetic disease?

TP:  Yeah, I ended up connecting with a few families through NORD—the National Organization for Rare Diseases—and they have a group website at Inspire {author’s note – see NORD’s website at https://rarediseases.org/ and Inspire’s Genetic Alliance Community at https://www.inspire.com/groups/rare-disease-and-genetic-conditions/}.  And we were able to write in and say “My child has that rare disease…” and they would match us up with another family.  There was another family in the Netherlands and a couple families in the United States at that point – so a handful of us.  We decided to start a Google group in March or April of 2008, right after we got Victor’s diagnosis, and then we posted a link of that onto Inspire, and that’s how we started to get families to connect with each other.  After that, we started getting more and more families trickling in from the Netherlands, the UK, and the United States.  Then I decided that I would teach myself how to make a website, so families could actually see something and we could have information about Pitt Hopkins to share.

In May of 2010, my husband and I were talking about how actually there was no research for Pitt Hopkins Syndrome, and how we had to give these families hope, because at that point the only papers that were being published—there was just a little handful—indicated the most severe symptoms of Pitt Hopkins Syndrome.  Most of the papers said that they would never walk, never talk and there was actually more variety than that fortunately.  So, we wanted to get that information out.  So, in May of 2010, my husband and I approached a community foundation in Winston-Salem called the Winston-Salem Foundation { https://www.wsfoundation.org/}.  And that’s a really great way for rare disease foundations that are just starting up to start fundraising, because you can hold your funds under the umbrella of the community foundation.  So, we did that.  And a few families in the US, simultaneously and including us, held a 5k and started raising for research.  So that was in May of 2010.  Then in the spring of 2012, the Davidow-Lapidus Family joined the Pitt Hopkins community and really exponentially increased our fundraising efforts.  And then we began getting our 501c3 status and have been fundraising and organizing since then.  So, we are now officially since the summer of 2013, a nonprofit.

WS:  Wow, what a journey!  Thank you for sharing all that background about your family and how that led to starting a foundation.  I think most people don’t realize what it takes to get that kind of thing started.  Now that you have the Pitt Hopkins Research Foundation, what’s the high-level goal of the Foundation? What’s its mission?

TP:  Its mission is to find a treatment and ultimately a cure for Pitt Hopkins disease.

WS:  In the community of rare and neglected diseases, do you interact with other organizations?

TP:  Absolutely, yes.  We interact most closely with Angelman Syndrome and Rett Syndrome, which are two diagnoses that some of our children do get at first before it’s found that they have Pitt Hopkins {author’s note – see also If not Angelman, what is it? A review of Angelman-like syndromes Am J Med Genet A. 2014 Apr; 164A(4) :975-92 and for leading foundations working on Rett Syndrome see both: https://reverserett.org/ and https://www.rettsyndrome.org/}.  They can move out of those into our syndrome.  Also with cerebral palsy we interact with many organizations too, because several of the kids are diagnosed at first with CP.  That was actually thought of first for Victor.  We got the MRI and other tests at the beginning, which turned out negative for CP.  And then also, Pitt Hopkins is on the autism spectrum.  So, we are interacting with autism groups as well.

WS:  What I’d like to do is turn our attention to the medical research community and how the PHRF works within that.  Maybe you could just help us understand as a parent of a child with Pitt Hopkins, what is your experience working with the medical community—maybe both positive, and negative—and not just the medical community but the medical research community?

TP:  Honestly, it’s been really positive.  Primarily we fund research into Pitt Hopkins disease through research grants.  We have a scientific advisory board comprised of top scientists from around the country who advise us on these grants.  We have an annual or sometimes biannual scientific symposium, where scientists come to give talks on the grant research, or research on Pitt Hopkins that we haven’t funded also.  It’s one of my favorite days of the year, because we all get really excited about all of the progress that they’re making.

WS:  As a rare genetic disorder, how is research into this disease different then something more common like cancer or cardiovascular disease?

TP:  Well, there are much smaller numbers of people with Pitt Hopkins Syndrome, so the families are basically raising the money themselves for research.  So, we don’t have big organizations.  We have no paid solicitors making phone calls or anything like that.  So, it’s really grassroots-type fundraising for us, and we are literally doing lemonade stands, 5Ks, bake sales, email campaigns—things like that which we’re doing to raise the money.  So, every single dollar really counts for us and we keep our overhead very low.  Actually, 93% of all that we raise goes to research directly.  It’s actually very, very unusual to have that level going directly to research, and it’s because we have hardly any overhead.  We only have to pay for our taxes to be done and we pay for an audit every year of our books to make sure everything is together.  And we have some expenses of course with our conference and symposium.  But very little.

WS:  Other than the financial side and some of the things you talked about before, what other role does your patient advocacy group play?

TP:  Well, we have a really robust website where we put a lot of information for families.  In our dropdown menu, we have ‘Newly Diagnosed’, where people can look at how they can connect.  We have a Facebook page, Facebook Group, Twitter, YouTube videos, Pinterest, Instagram, where we are able to connect and help families understand and connect with each other.

WS:  You mentioned that some of what you saw with your son Victor was atypical from what was understood out there.  Is that part of what you’re finding—that families have different stories?

TP:  Absolutely.  There’s a big broad spectrum for Pitt Hopkins.  There are some children with Pitt Hopkins that are speaking verbally.  But a lot of them use communication devices, often on an iPad.  My son does.  He wears it.  He wears an iPad mini on a harness that drops down over his lap.  Its upside down, and he can lift it up and tell us things that way with icons and words.  That’s been super helpful because in the past people thought, before we were able to access alternative communication devices with our kids, we weren’t sure about their intellectual capacity.  But we really feel that they have a processing problem instead of really an intellectual problem.  It’s a little more along the lines of autism in general, where they understand but you have to work out a way to get access, for them to be able let you know what they know.  There’s more of a learning disability issue with the kids than was understood before.  So, it can be very frustrating for children because they know more than they can tell you which is frustrating for them.

WS:  What has PHRF accomplished to date in terms of research funding or other types of examples of working with the medical research community?

TP:  In 2012, we awarded our first research grant.  Our researchers developed mouse models for Pitt Hopkins Syndrome – so, Pitt Hopkins mice that have the TCF4 gene that is impacting our children, the deletion of that is in their genetics.  We want to fund – and we do fund – aggressive treatments for Pitt Hopkins with grants that are looking into compounds, medicines basically, that will help our kids.

So, today we have four medical avenues that we’re pursuing with our grant funding.  One is called vorinostat that is a cancer chemotherapy, which has reversed the symptoms of Pitt Hopkins in our mice.  Very, very exciting.  And that was developed by Dr. David Sweatt, who’s now at Vanderbilt, and Dr. Andrew Kennedy who’s now at Bates College.  They were at the University of Alabama, Birmingham.  Also, one of our grant recipients is Dr. Brady Maher at the Lieber Institute for Brain Development at John Hopkins.  His is with sodium channel blockers.  Another avenue is with gene therapy and that’s at UNC Chapel Hill, and that is with Ben Philpot and Steve Gray.  And that would be very exciting.  And then we have an additional new grant at the Los Angeles Biomedical Research Institute with Michelina Iacovino, which would be a protein replacement approach.  We have four avenues because we don’t feel like it would be a good idea to put all of our efforts down one avenue.

WS:  What do you think the future holds for research and treatments for Pitt Hopkins and other rare and neglected diseases?

TP:  I think that right now there seems to be a really big push into research on rare diseases.  All the rare diseases are collectively getting together and saying, “Hey, we’re here!” – combined together they make one big common type of genetic disease category.  I think this is the day and age of rare diseases.

For example, with Pitt Hopkins something that’s very exciting for our research is that it’s on the autism spectrum, and it’s very rare to have well-defined genetic causes of autism.  There’s only really Pitt Hopkins and Fragile X and maybe a couple other genes that are indicated that cause autism, but there’s not really a great genetic pathway or blood test where we can say, ”This is what’s causing autism.”  And so, if we could find a cure for Pitt Hopkins, it could potentially help cure many people with autism that I think do have Pitt Hopkins Syndrome, but are undiagnosed.  So that could be very exciting for research into autism.

WS: What can people do to help with rare and neglected diseases in general and with Pitt Hopkins in particular?

TP:  I think with rare and neglected diseases in general, since most people do give to non-profits, just to think about giving to some of the rare disease groups as well as the big organizations.  Because we’re rare our numbers are low, but we are just as deserving of funding.  We do a lot with the money that is provided to us – we are making a big impact.

WS:  Fantastic.  I hope this interview helps with that and we can help your organization raise some money for this very important cause.

TP:  Absolutely and our website is pitthopkins.org.  So please come and visit us.  We have stories about our kids there, lots of information, pictures of our children and the research that we’re doing.  It’s really interesting.  And you can follow us on Facebook to keep up to date with the Pitt Hopkins community.

This blog is authored by members of the CDD Vault community. CDD Vault is a hosted drug discovery informatics platform that securely manages both private and external biological and chemical data. It provides core functionality including chemical registrationstructure activity relationshipchemical inventory, and electronic lab notebook capabilities.

Steps Start Somewhere

Last night while Matt was away playing hockey, my babe and I attempted to take some steps together. We have a KidWalk on loan and we have been putting her in this “stander,” for a few days now.

This time I decided to put her in it and NOT help move her feet step-by-step like we normally do. Instead I asked her to do it herself. The video is nearly 5 mins long, but I don’t want to cut any of this special moment out. I want to remember tonight for years to come. When we can think back and say “look how far she’s come.”

Beans, beans and more beans!

This week we enjoyed some new sensory play with beans…and Alexandra LOVED it!

Most toys that she is attracted to light up, play music or say exciting things — it makes total sense for her to enjoy play-time with these types of toys. However, in an effort to get her exploring new textures, colors and sounds, beans were the perfect solution.

In our home, beans were most often consumed in the refried varietal, but now we are enjoying them raw and uncooked, lol!

Beans are helping Alexandra with her:

  • Fine Motor Development;
  • Hand-Eye Coordination and Control;
  • Cause and Effect;
  • Concentration; and
  • Spatial awareness…

All of which are super critical to her development, who knew beans could be so much fun! Take a look at her enjoying the beans for the first time.

Big Girl Shoes

Many of you may have seen the video going around on Facebook this week from my time with Carey Pena for Arizona Gives Day. In the video, I mention that just that morning was a pretty big “inchstone” in our life with Alexandra. For the first time…EVER….she wore “big girl” shoes.

standing2I picked her up and leaned her against the ottoman….

and she stood…

She stood in her big girl shoes.

Then she smiled.

While standing in her big girl shoes.


In our world, this small (to most) but super mighty moment (to us) was so moving, inspiring, amazing, incredible. It was a moment of pure joy that I was able to witness her doing such a monumental, developmental feat.

A typically developing 2-year-old does the following:

  • Stands on tiptoe
  • Kicks a ball
  • Begins to run
  • Climbs onto and down from furniture without help
  • Walks up and down stairs holding on
  • Throws ball overhand …

And here we are, over the moon that she stood unassisted in shoes.

As I type this there are tears. Tears of joy yet tears of frustration that our angel has to fight so hard for such a simple thing. Pitt Hopkins has taken so much from her and we are just starting this journey. There will be so many things that will test her abilities, that will test her strength, that will test her mind to overcome and (hopefully) conquer.

Some have messaged me saying that I was so strong in that interview, and how amazing it was that I didn’t cry. Well the truth is, I cry enough. I have no business to lose it on camera. While Alexandra may have to fight some hard battles, I will not let my own abilities get in my way. I have a voice, I plan to use it to help educate others about incredible children like Alexandra. I have a gift of mobility, I plan to allow it to carry my being to help spread awareness. I have in my genetic makeup, the gift of the missing gene that Alexandra lacks. The gene that prevents her mind and her body from working in conjunction with one another. That prevents speech and language (as most understand) to occur. That strips away a “normal” toddler life.

standing3Today, I look at these photos of her standing and I am just in pure awe. Really, it just stops me in my tracks. It is a beautiful sight to see that I will never take for granted. One day, I hope to look back on these photos and realize just how far she has come. From the day of standing in big girl shoes to the day where she is running around the backyard, or holding my hand as her little feet carry her across the street.

Gosh, how I love her so…

One day…

More photos of her standing and her smiley face here.

ΓΦΒ Alumnae Wine Tasting and Fundraiser

Hi lovely sisters! You are invited to join other ΓΦΒ alumnae, Alexandra and I for a wine tasting and fundraiser to benefit the Pitt Hopkins Research Foundation.

April 11, 2017 | 6 PM – 8 PM | Total Wine & More (Scottsdale, AZ)
10320 North Scottsdale Road, Suite 110, Scottsdale, AZ

The event is complimentary from a generous donation from a fellow sister. However, we ask that you make a minimum of $25 donation to join Alexandra’s Pitt Crew — all 100% of your donation is going directly to fund critical research being done by the Pitt Hopkins Research Foundation (Pitt Hopkins .org).

I hope to see some familiar faces and reconnect with you all! Much love to you and your families and thank you in advance for your donation to help fund a cure for our little lady, Alexandra Anderson.

RSVP required by April 7th by emailing: events@phxgpbalum.com
** Limited seating for 20. **

After you RSVP, please make your donation online at: https://alexandraspittcrew.org/pittcrew/.

Live Out of State?

Out of state and can’t attend? You can still particicate virtually and make a gift online at: https://alexandraspittcrew.org/pittcrew/.

Download informational flyer here.