News

The HuffPost

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The Huffington Post recently devoted time with my family to fully understand our daily struggles as we battle a rare disease to save Maxwell. 

The journalist and photographer deeply cared about Maxwell and felt our sense of urgency as we frantically race to develop a gene replacement therapy for Maxwell before it is too late. 

They witnessed the exhaustion and tears of leading scientists while trying to raise upwards of $1,000,000. 

Our email communication included many 2am time stamps and phone calls where I was slurring my words from an all-nighter.  Not to mention doing all of this while caring for two-year old twins that need a semblance of a normal childhood.  I cannot allow “this” to detract from their beautiful lives.  I try to make Maxwell’s 12+ thera\py sessions a week enjoyable even though it’s physically and mentally straining.  And then there is Riley, Maxwell’s sassy pants twin sister who deserves time focused on her specific needs.  She cannot fall into the forgotten child category.

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This is not easy and I wouldn’t wish it upon anyone.  In fact, I am working day and night to ensure there is not another Freed family.

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Thank you to the HuffPost for your beautiful coverage of our little family in a big fight to change to this world.

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On a funny note, The Huffpost published this picture of me taking a rest.  Please read our story below.

Huffington Post Article

Janus Charity Challenge

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I spent my career in equity analysis and made some very dear friends along the way, most recently at Janus Henderson Investors. When doctors began warning us that Maxwell was not well, I left my career in a frazzled, frantic state. I tried to be strong the day I resigned from Janus, but I simply couldn’t hold it together. I burst into tears in front of my team leader and HR representative, barely able to form the necessary words. I was finally able to communicate that my son has a medical emergency and that I needed to leave immediately. Everyone was empathetic, concerned and wanted to help. I tried to complete a final walk through to say formal goodbyes, but I was too upset to say all that I wanted to say. I sent an informal goodbye to the group e-mail list and slowly reached back out as regained my composure.

Lisa Neison and Rich Carney are two dear friends from Janus Henderson, and some of the most authentic people I know.

They were among the first friends to learn I was having twins, and Lisa even held a baby shower for me at Janus! After the twins were born, Lisa and Rich always asked for updates and wanted to see pictures, and Lisa spent many work lunches helping us with feeding time. When Maxwell was diagnosed, Lisa and Rich were both huge sources of support, understanding and grieving beside me, but also cheering me on as I chased scientists all over the world.

They told me to be fearless and relentless, and I listened wholeheartedly and made sure to keep them updated.

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Janus Henderson holds an annual charity challenge, for a $75,000 grand prize, in a Shark Tank format where you have 10 minutes to pitch your chosen charity. Lisa and Rich championed SLC6A1 Connect and we put together an all-star pitch. One of Maxwell’s many guardian angels, Dr. Larson from Children’s Hospital of Colorado, even came to speak! Dr. Larson diagnosed Maxwell and has been a huge advocate for him and the rare disease community. We practiced many times together and I privately practiced on my mostly indifferent cat at least 100 times. When the day of the pitch finally arrived, I was both nervous and excited. Many of my former Janus colleagues came to cheer me on, and seeing their familiar faces in the audience was comforting. The 10 minutes went by in such a flash, I barely remember the actual pitch. The “twinado” made their grand appearance for the final minute and stole everyone’s hearts. Maxwell was dressed as smart as Prince George (but looked even cuter!), and Riley was a fashion princess in her sunflower sundress. Needless to say, their appearance helped to seal the deal. But then the wait began…

The competition was held among multiple international Janus Henderson locations, and due to the time difference, the winner wasn’t announced until the following day. I couldn’t attend the presentation as I was on a flight to attend a conference at the National Institute of Health, but I compulsively checked my phone for updates during the long flight. Then, as we were about to land, I accepted a Facetime from Lisa and Rich who were calling to tell me we won the charity challenge!

I was screaming and ugly crying as we landed, and in retrospect I was probably lucky an air marshal didn’t apprehend me for making a scene.

The $80,000 prize gets us to a total of $500,000 toward our goal of $1,000,000. We’re halfway there! We are halfway to our first goal of developing a gene therapy to help every child affected with SLC6A1.   

Thank you to Lisa, Rich and Janus Henderson Investors for believing in SLC6A1 Connect.

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2019 Global Gene Rare Champion of Hope

Each year, Global Genes, a leading global rare disease patient advocacy organization, asks the community to nominate those deserving of recognition for their extraordinary efforts in rare disease.  Nominations are accepted in the areas of advocacy, medical care and treatment, and science and technology.

I was nominated this year to receive the reward!

I am so proud and honored.  I am often asked what drives the 70 hour weeks, travel and tears.  The answer is Maxwell’s little face and all of the other children affected by this horrible neurological disease.  I live the other the family’s sad stories and hear the hopelessness in their voice – like a child requiring plastic surgery from breaking their nose seizing.  These kids did nothing to deserve their suffering.  Nobody can advocate better than a mother for her child and I will not stop until a cure is found.

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Mother’s Day

“God could not be everywhere, and therefore he made mothers.”

-Rudyard Kipling

 

When I woke up this morning, I couldn’t help reflecting on the past few years.  Mark and I wanted children so badly that we suffered through 2 years of IVF, but nothing could have prepared me for the overwhelming joy I felt when Maxwell and Riley were placed in my arms. My heart nearly exploded with love for these perfect little babies. Everything I thought mattered prior to their arrival instantly became an afterthought. Their health, happiness and well-being became my top priority.

The past two years have been full of high-highs and low-lows.  The despair and sadness of dealing with a rare neurological disease are offset by the celebration of every little milestone and not taking a moment for granted.  Twin hugs and open-mouth kisses brighten every day, and drool-covered shirts and banana-smeared jeans have become my favorite fashion statement.

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I never could have imagined the path my life would take when Maxwell was given a diagnosis of SLC6A1 and no hope for a treatment. Now, in less than a year, we are well on the road to a cure for his rare neurological disease, and I have found a great fulfillment in advocating for Maxwell and other affected children. This fight and what we’re achieving has made every sleepless night worth it.

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As mothers, we all put our children’s needs ahead of our own.  We are stretched to our limits on a daily basis, but we are also fierce and full of love.  I am so thankful on this day to have been blessed with little knuckleheads like Maxwell & Riley.  I thank God every day for blessing me with these beautiful children.

Happy Mother’s Day!

Ode to Riley James Freed

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

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.

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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.

 

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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!?!

Happy Birthday Maxwell & Riley

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.

 

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.

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

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

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.

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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

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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