News

9News Loves Maxwell

Kim Christiansen with 9News graciously told our story on the Denver news tonight. Our family anxiously gathered around the TV waiting for our big debut. Kim covered our story with the care and understanding of a fellow mother, and our comfort during the interview is evident in the finished product. You can tell Mark and I felt like we were with family, chatting about our sweet Maxwell and Riley like it was any other day.

Click Here:  9 News Story

Thank you so much Kim and 9News!

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Charity Gala – March 8th, 2019

Maxwell is surrounded by guardian angels and his army grows daily.  One of his guardian angels is a woman named Laura Leavy with Thrive Mortgage.  Thrive Mortgage & Legend Title host an annual business mixer & client appreciation charity gala.  Laura Leavy selected our non-profit to be the recipient of the gala this year!   We could not be more humbled, honored or excited for this fun filled event.  There will be a red carpet, wine pull, raffle, silent and live auction items.  The evening is going to be an absolute blast with confirmed celebrities:

  • Colorado Forward JT Compher
  • Colorado Defensemen Nikita Zadorov
  • PGA Tour Canada Pro  James Love
  • NFL & CU Buffalo Justin Drescher

 

Friday, March 8th, 2019

Infinity Park Events Center

7:00pm – 10:00pm

$40 per Ticket

Business Attire

Please join us for the star studded event!  We look forwarding to seeing you there!  Thank you again to Thrive Mortgage & Legend Title.  Tickets can be purchased here:

BUY HERE

 

 

 

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Happy Valentine’s Day

Maxwell and Riley celebrated Valentine’s Day together.  They enjoyed a culinary adventure of chocolate chip pancakes with fresh squeezed orange juice over candlelight high chairs.  The best friends enjoyed each other’s company.

Could there be anything more sweet than this!?!

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Happy Valentine’s Day

There’s No Place Like Home

I moved to Pueblo, Colorado when I was 13 years old and eventually graduated as valedictorian of South High School. Like many college-bound youths, I traded the familiarity of home for someplace new and exciting–in my case, Denver–but I’ve never forgotten my years in Pueblo. When I go see my mom, who still lives there, I love to revisit my favorite places. Walking down the historic Union Avenue, shopping in Seabels, and eating green chili delicacies–there’s so much to love about Pueblo! And, above all else, I most love Pueblo’s strong sense of community – it is second to none. It is a community that prides itself on authenticity and helping a neighbor in need.

 

When Maxwell was first diagnosed with SLC6A1, I found that my friends from Pueblo were the first to call, text and offer assistance in any way possible. Even friends of my friends reached out, resulting in many new and welcome friendships. One of my best friend’s friends, Bethany Kostecka, had her entire kindergarten class make Christmas cards for Maxwell, complete with sweet little notes of encouragement. Those cards are now the “wallpaper” in his bathroom, and we admire the beautiful artwork while the twins take their nightly bath. Another dear person, Autumn Tozer, reached out when she heard about Maxwell and asked what she could do to help. Autumn’s family owns my favorite restaurant in all of Colorado – the Do Drop Inn. It is the best pizza I have ever eaten, and so good that Mark bought a separate freezer for our garage to store pizza. (I wish I was joking!) The kindness from Pueblo has kept on coming, and we are immensely grateful!

The Pueblo Chieftain newspaper was the most natural fit for our story. As I made the familiar drive to Pueblo for my interview, I fought back nervous jitters as I wondered what to expect. My nerves were immediately eased when the Chieftain’s empathetic report staff listened to my story and took careful notes. As I made the return trip to Denver, I was confident our story was in good hands. The article appeared on the front page of the local section today, January 27th, 2019, and I could not be happier. Please take a moment to read about our journey:  Pueblo Chieftain Article

A First Birthday to Remember

Mark and I have dear friends named James & Aimee with a beautiful daughter named Vero.  Vero is just a little younger than Maxwell & Riley.  We knew the kids would be best friends from the moment we found out Aimee was pregnant.  In fact, Vero and Maxwell are probably going to get married.  Vero has been the most fun play date while James and Aimee have been a constant source of friendship and support.  You could not ask for better friends.  Adorable little Vero celebrated her first birthday yesterday. You can imagine my reaction when a message landed in my gmail that in lieu of gifts, Vero preferred donations to help Maxwell. My eyes filled with happy tears. The kindness is overwhelming.

Vero

Vero’s 1st Birthday was the social event of the year.  Vero was dressed in ruffled navy dress to complement her smash cake and Maxwell wore his 3-piece suit to impress Vero.  Vero was successful in enjoying her smash cake and Maxwell was successful in impressing Vero.  Every party attendee loved on Maxwell and wanted to help us along our journey even though Riley jumped in the smash cake.  I am learning that this journey consists of very high highs and very low lows.  Yesterday was an excellent day.

New Year’s Obsession

My hope for 2019 isn’t necessarily a hope – it is an obsession to cure my son’s neurological disease.

I reflect back to my family this time last year.  We knew Maxwell was developmentally behind his twin sister Riley but we still clung to the dimming chance that he was just a late bloomer.  Test results continued to come in worrisome but there were no answers.  My eyes were nearly swollen shut from crying at night, crying in the shower, crying in my office bathroom and crying in the car as we struggled to even tell close friends that Maxwell was not okay.  The words could not come out.  I remember feeling terror and panic so strongly my arms would go numb and I could barely breathe.  We never could have imagined or prepared ourselves for the road laid ahead.

We finally received Maxwell’s devastating diagnosis in May.  The diagnosis was actually worse than some of the worst case scenarios I had created in mind.

I sat with numb disbelief. 

How could this happen?  Why did this happen?  Why couldn’t it have been me? 

I pleaded with God to allow me to trade places with my sweet boy.  Total defeat and depression would have been easy in that dark moment and I may well have chosen that path if the diagnosis was for myself.  But it wasn’t for me – it was for my baby, Maxwell Norman Freed.

The remainder of the year was a blur. 

We walked out of Children’s Hospital with the diagnosis and I frenetically began calling scientists.  Days consisted of physical therapy, occupational therapy and doctor appointments for Maxwell while balancing special time with Riley.  Every nap was an opportunity for a call with US-based scientist.  Nights were reserved for calls with people in Asia and Australia, applying for a 501c3 status, rallying affecting families, building a website, organizing a 50 scientist symposium, etc.

I could hear a clock ticking every time I tried to sleep knowing I was losing precious hours that could have been spent saving Maxwell from this disease. Even now, I often feel like an outsider looking in, like this couldn’t possibly be happening to our family, to our Maxwell.

One of the highlights of 2018 was receiving the call from an elite group of scientists with the news they were committed to developing a cure.  I remember the EXACT moment.  I was holding Maxwell when I saw a Dallas area code appear on my phone.  I quickly answered the call, nearly dropping Maxwell in the process and tried to speak in my professional voice even though my legs were shaking.  Tears of joy and relief streamed down my face as the scientists said they could help.  Mark was watching this crazy chain of events unfold and like any committed husband and father, kept asking what was going on as I shushed him and tried to take notes.  I touched the end button on my IPhone and started screaming.  Mark and I danced around the kitchen with the babies as we celebrated the news.    

The therapy will require a substantial fundraising effort. 

It is and will be very difficult to raise $1,000,000 over the course of the next year to ensure the therapy advances from bench to bedside.  But, I am able to fight for Maxwell in ways I never could have fought for myself.   That is what mothers do for their children.

As 2018 comes to a close, I thank all of you for fighting with me and following my story into 2019.  There are 7,000 rare diseases in existence today.  My prayer for 2019 is the SLC6A1 is no longer on that list.  Our journey will provide a blueprint for the next Maxwell Freed and their family in this world. 

 

Merry Christmas

On this Christmas Day, we are reflecting on our many blessings.

We are more than blessed. We have beautiful twins. We have more good days than bad days. We have hope. We have a faith stronger than oak.

Merry Christmas! We hope everyone is having a wonderful day filled with joy.

Maxwell and Riley’s mom – Amber

The First SLC6A1 Symposium

We put on the first symposium for Maxwell’s disease in late November and it was an overwhelming success.  The many late nights of planning all came to fruition in the best way possible!  The experience of having 50 brilliant scientists, from all over the world, collaborating on the cure for SLC6A1 was entirely surreal.  Each speaker was a powerhouse of information and ideas.  The hotel electricity went out 2 hours into the event and the scientists didn’t miss a beat.  The discussion continued seamlessly in the dark; albeit, a more intimate setting.  Every attendee commented that it was one of the most productive conferences they had ever attended.

SLC6A1 Connect had a booth at the American Epilepsy Society annual meeting following our symposium.  The booth was armed with an extensive candy bar designed to lure in unsuspecting scientists. Similar to a Venus flytrap, I captured each unassuming scientist as they reached for a Snickers and barraged them with questions. Below is a picture of Mark, me and the woman who found the gene, Gemma Carvill.

We had plenty of time for fun as a family including the zoo, the French Quarter and eating too much Cajun food.  Riley took a nasty spill and caught a rug burn on her nose (poor baby) and Maxwell loved the warmer weather.

Family pic

The trip went by too fast.  We were waiting for our flight along with a group of nuns.  I approached them and asked if they could pray for healing over Maxwell.  This group of women were so kind and caring, Maxwell was immediately surrounded by love.  They lifted our family in prayer and asked for the Great Physician to heal Maxwell.  They even tweeted our GoFundMe to their 40,000 followers!  It was a perfect ending to a perfect trip.

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Press Release

SLC-Square

FOR IMMEDIATE RELEASE

Contact: Amber Freed, SLC6A1 Connect
Phone: 303-907-8038
Email: afreed@slc6a1connect.org

SLC6A1 Connect Earns GuideStar Platinum Seal for 2018

Potential funders can see that SLC6A1 Connect is Committed to Highest Level of Transparency

DENVER, CO, October 2018 – SLC6A1 Connect is proud to announce that we have earned the GuideStar Platinum Seal of Transparency for 2018. This is the highest level of recognition offered by GuideStar, an organization dedicated to revolutionizing philanthropy by providing information that advances transparency, enables users to make better decisions about the donations they give, and encourages charitable giving.

SLC-GuidestarSeal

Web Link: GuideStar Platinum Seal

Web Link: SLC6A1 Connect’s GuideStar Profile

Why the GuideStar Platinum Seal Matters

Achieving the Platinum Seal of Transparency through GuideStar means that SLC6A1 Connect has shared information with GuideStar that can be accessed by potential donors. This information demonstrates SLC6A1 Connect’s dedication to making progress toward and ultimately achieving our mission.

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If you would like more information about this topic, please contact Amber Freed at 303-907-8038, or e-mail afreed@slc6a1connect.org

Miracles Take Hard Work

We can all fondly remember some of the best moments of our life, like a wedding, graduation, or the birth of a child. I will never forget the feeling of meeting Maxwell and Riley for the first time. I didn’t know a human heart was capable of that much love. At that moment, my entire life’s focus became my family. I no longer cared about my career, current events, or even a really bad haircut. I would joyfully give my life to protect them. My prayer to God is that they grow up to be healthy, happy and fulfilled adults with every opportunity life can provide.

Early on, I noticed that Maxwell wasn’t progressing at the same rate as Riley. It was so strange but he wouldn’t use his hands to grasp toys or even explore. Well-meaning friends and family would tell us that boys are slower than girls and every child develops at their own pace. My gut told me something wasn’t right. I was frantic and suffocating with fear inside.

My worst fears were confirmed on diagnosis day. Mark and I were led into a sterile and cold room at Children’s Hospital and sat before a group of doctors with solemn faces. Genetic testing revealed that Maxwell had a rare neurological genetic disease with only 34 confirmed cases in the world. It didn’t come from Mark or me, it just unfortunately happened.  It’s entirely unfair and a testament to how dark and cruel this world can be.  Maxwell will have intellectual disability as well as a movement disorder, may not speak and will develop a devastating form of epilepsy between ages 3 and 4 at which point he will regress. Nothing could be done. Accept it. It was the darkest moment of my life. It was a parent’s nightmare.  It was too much to digest in the moment and even too much to digest now.  I realized that Maxwell’s future was not as I imagined when I held that sweet little baby in my arms.

Diagnosis day was 4 months ago. Since that day, I have spoken to 97 scientists from all over the world to decipher the best path forward. I survive on 4 hours of sleep, coffee, and cold pizza. I have sent baked goods to researchers that wouldn’t return my calls until they felt compelled to thank me for the gifts. I have attended conference after conference, met with officials from the National Institute of Health, the Federal Drug Association, and other government agencies.  I am focused on the cure and we now have a path forward.

Throughout my research, all roads led back to Dr. Stephen Gray at UT Southwestern. Dr. Gray develops gene replacement therapies. Gene replacement isn’t a daily drug, it is a once and done solution where a good copy of the gene replaces the bad copy of the gene. I have personally met some of the children he has saved. I am proud to announce that our foundation is officially working with Dr. Gray to develop a gene therapy for Maxwell’s disease. We are in a race against time and our goal is to develop a treatment within the next 18 months. The opportunities I long for Maxwell to have are now within arm’s reach.

The path ahead will not be linear and we are trying to mentally prepare. There will be big hurdles both emotionally and financially. In this moment, I take solace knowing our miracle is underway.  Miracles take hard work and Maxwell is worth it.

Maxwell and Riley’s mom

 

Rare Love