News

Ode to Riley James Freed

SLC6A1 Gene

The siblings of kiddos with complex health circumstances can get lost in the shuffle of the attention.

Riley James Freed is the unsung hero of our household.  She handles every circumstance with a grace most adults can’t comprehend and has endless empathy for her twin brother.  It is a daily struggle to make sure this beautiful little girl receives a proper amount of attention.  If you could only see her concern while Maxwell struggles through 10+ therapy sessions a week and all of the accompanying doctor’s appointments.  Riley obviously doesn’t understand the specifics but knows when Maxwell is unhappy or not feeling well.  She stands with him, holding her stuffed Elmo, pats his arm and says, “Maxie.”  She comforts Maxwell in a way that only a twin sister could comfort him. 

Maxwell is not developmentally prepared to play with Riley.  Riley understands that Maxwell needs extra help and she is infinitely patient with 5-minute older brother.  We went to the zoo last week and Maxwell was very interested in some mean Geese.  He started reaching for the geese from their Radiowagon.  Riley started yelling, “Maxie Maxie No!”  Maxwell loves to hug Riley, but sometimes he struggles to modulate his strength and the hugs can be really intense.  Riley remains very calm and hugs him back.

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Riley and I have weekly mommy/daughter dates where she gets special attention.  We dress in semi-matching outfits and get a delicious treat, followed by a little shopping.  Riley LOVES to walk through the shoes at Nordstrom’s Rack and browse the latest fashion for toddlers.  She acts like an adult, pointing and saying, Shoe Shoe!  She waves at every passing shopper and greets them with hi!  It is beyond adorable.

Riley is so full of life!

Her laugh and smile are contagious and she passionately loves Elmo.  When I open the twin’s bedroom door in the morning, Riley immediately asks, “Elmo?”  I always wonder why she thinks Elmo might wake her up and how she would react if Elmo were to appear.  Watch this video of Riley feeding a plastic lizard some goldfish if you would like to smile today:  Watch Riley Feed a Plastic Lizard.  

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Riley is stylish and asks for her hair to be fixed daily – there is finally enough hair for a little pigtail.  She loves to walk around in my high heels, wearing her jewels (aka St. Patricks Day beads) along with a practical purse.  Riley loves to sing and dance with her favorite song being Head, Shoulders, Knees & Toes.

I have no doubt that Riley is going to make a tremendous impact on this world.  I am so proud of her that I could burst.

Maxwell is so blessed to have Riley Girl as his twin sister.

Fun Events & Happenings for #MilestonesforMaxwell

SLC6A1 Gene

First a fundraising update – we have raised over $200,000 with over 1,300 contributors since we started our campaign four months ago.

Thank you!  Thank you!  Thank you!

Are you in Denver, the Golden Area or Pueblo and would like to support our efforts to cure his rare neurological disease?  Maxwell Norman will be making a personal appearance at every event.  This means picture opportunities, snuggles and possibly a little drool.  Maxwell is even bringing his twin sister, Ms. Riley James!   Please beware and watch out for paparazzi.  Riley has planned a speech about how much she loves her brother as well as how much she loves Elmo and apple juice.

Fit4Mom

Fit4Mom on April 12th at Wash Park

Join us for a Stroller Strides Class to support sweet Maxwell!  Meet outside at Wash Park for a fun hour long workout and show your support for Maxwell.  Meet at the corner of Louisiana and Franklin at 9:30am for a mom/baby workout class followed by a Rocky Mountain Aardvark class!  Buy your tickets here:  Buy Here!

 

Cupcakes

Goldmine Cupcakes on April 13th in Golden

Join us for a Mommy/Son date night with pizza, cupcakes, popcorn, photo booth, hayrides and of course – CUPCAKES!  Tickets are $25 for the mommy/son couple with a portion of the proceeds going directly to #MilestonesforMaxwell.  Call (720) 328-9531 to reserve your spot today.

 

Cartoon Dew Drop

Do Drop Inn on April 15th in Pueblo West

Please join us for a fundraiser at the Do Drop Pueblo West to support #MilestonesforMaxwell!  Look forward to a night of delicious pasta, a silent auction and of course Maxwell!  Tickets are $12 each.  There will be a large silent auction with microblading and lash lifts for the ladies, an autographed Von Miller jersey and golf packages for the gentlemen and Caribbean vacations and Rockies tickets for the family.

We hope to see you there for some red carpet pictures.  The event will begin at 4pm and end at 8pm.  It would be really helpful for headcount planning to buy the tickets in advance!  Here is the link:  Buy tickets.

Did I mention that MAXWELL will make an in-person appearance at all of the events!?!

The Dynamic Duo
Snuggle Me!

Happy Birthday Maxwell & Riley

SLC6A1 Gene

The Twins Turn Two on the 27th! 

We celebrated with a special celebration with all of their friends at Great Play in Cherry Creek over the weekend.  Maxwell and Riley were dressed as cowboys with matching vests, boots and sparkly hats.

Maxwell was a little sick of the pictures.

 

Last year, I spent months planning every detail of the twin’s first birthday.  I was so excited that the party got a little out of control!  We had over 100 guests, a face painter, balloon artist and a dessert bar with 15 different desserts.  The dessert bar was so successful that we had a subsequent ant infestation.

One of my favorite moments of any 1st birthday is a smash cake.  For Maxwell, the smash cake represented all of my fear, anxiety and heartache.

Last Year
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What a Party
Heart Melters

Maxwell could not use his hands.  He had never touched my face or reached for a toy.  I knew he would not indulge in the smash cake and I didn’t want people to notice or ask questions.  Mark and I knew something was very wrong with Maxwell but we had no idea what to even tell people because we didn’t have a diagnosis.  I couldn’t physically talk about it without bursting into tears.

As the days led up to the party, we considered cancelling to avoid the situation entire.  We ultimately decided that Maxwell and Riley’s 1st birthday was a celebration of their beautiful lives and the immense joy they bring us daily.  We refused to let fear overshadow a special day for these little babies.

Today is bittersweet.  I reflect on the past year and truthfully, it has been very hard and mostly a blur.  We heard the term SLC6A1 for the first time, followed scientists all over the world, organized a scientific symposium, started fundraising and pulled more all-nighters than all of college combined.  On the home front, Maxwell has endured 10 therapy sessions a week – physical, occupation, speech, horse, swim, etc.  Riley has maintained her joyous tenacity for life.  It has been very difficult to balance becoming an honorary molecular biologist, chief fundraiser, running a patient organization and trying to be the best mother in the world.  Our family has more perspective now than I ever could have imagined.  I regularly wonder why my former life, career, relationships, etc; once stressed me out.  We have cut out the noise entirely.

The worst symptoms of SLC6A1 begin between the ages of 3 and 4 years.  We still have a $750,000 funding gap.  We are racing against time to raise money, advance the clinical trial and give Maxwell a shot at life.  Birthdays are a reminder that time continues to march forward.   I would be lying if I said I wasn’t terrified.  

Like last year, we are trying our best not allow fear to overshadow the twin’s special day.  SLC6A1 may not steal any birthday joy.  I am so proud to be their mommy and honored that God entrusted them to us.  There is nothing better in life than Maxwell & Riley.

Happy birthday little babies!

60 Minutes Episode on Gene Therapy

SLC6A1 Gene

60 Minutes aired a story about gene replacement therapy CURING sickle cell anemia.   The story highlighted a woman experiencing pain as “very sharp, like stabbing, almost feels like bone-crushing pain.” She was barely capable of physical activity, spent weeks a year hospitalized and didn’t know if she would live into her 30’s.  Just 9 months after gene therapy, this woman can now swim, run and participate in jiu jitsu class.   60 Minutes showed footage of her joyfully being slammed to the ground in jiu jitsu – something that could have nearly killed her.

“I believe that this looks like a cure,” says Dr. Francis Collins, director of the National Institutes of Health. “I got to be careful. But from every angle that I know how to size this up, this looks like a cure.”

Gene therapy is in clinical trial for thousands of genetic conditions.  My eyes filled with tears watching this woman fully recover and living a life she didn’t know existed.   This is the reality of gene therapy – life for thousands of people afflicted by diseases that were deemed hopeless.

Half of all rare disease diagnoses are children and 30% of those children will not live to see their 5th birthday.

If you want to cry happy tears, google the drug Spinrazza and see children with spinal muscular atrophy walking up stairs after being wheelchair bound.  Death is no longer the only outcome for these diseases.

Dr. Collins sees more reason to hope. “There are 7,000 genetic diseases for which we know the precise DNA misspelling,” he tells LaPook. “Couldn’t this same strategy … set of principles work for lots of those, maybe someday all of them?”

SLC6A1 is one of the diseases that can be cured by gene therapy and are relentlessly forging toward the cure.

Watch the Full Episode Here:  60 Minutes Overtime.

We could not get there without all of YOUR help.

 

Maxwell’s Gala Recap

SLC6A1 Gene

Thrive Mortgage hosted a gala Friday evening to benefit Maxwell and the night was absolutely incredible.  Guests arrived to a #MilestonesForMaxwell red carpet before heading into the beautiful event.

The event was so much fun with so many games!  The silent auction featured artwork from Lindsay Jane Ternes Fine Art and unique sports memorabilia.  The live auction surprised everyone with irresistible trips to Africa, a year supply of gourmet steaks, a fly-fishing trip and golfing excursions.  In total, 6 trips to Africa were sold!

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The Colorado Avalanche players were SO supportive of Maxwell!  Here is J.T. Compher, Ryan Graves & Tyson Jost holding Maxwell’s sign.  Ryan Graves (white shirt) is just shy of 7 feet tall.

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One of Maxwell’s biggest supports has been Leah Block from the Bachelor.  Leah has been a constant source of support and fun ideas.   Leah Block

Laura Leavy from Thrive Mortgage made all of this happen.  Laura selected us to be the recipient of her beautiful event based off of our GoFundMe.  She did this all for a stranger…someone she had never met.  Laura truly is one of Maxwell’s guardian angels.

Thrive

The final numbers are still coming in but I will update GoFundMe with the final proceeds amount!  Thank you to all of our friends & family that came to support Maxwell.

9News Loves Maxwell

SLC6A1 Gene

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

SLC6A1 Gene

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

SLC6A1 Gene

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

SLC6A1 Gene

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

SLC6A1 Gene

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.