Milestones for Maxwell

$573,019 of $1.0M goal

Raised by 2,163 people in 9 months
Created November 14, 2018
After 2 years of IVF, Maxwell and Riley Freed were born on March 27, 2017 and made us the most happy people on the planet.  In an instant, our lives were filled with purpose while we counted two sets of 10 tiny fingers and 10 tiny toes.  We were ecstatic, content, and life was perfect.

At around 4 months, we noticed that Maxwell wasn't progressing like Riley.  Maxwell showed intent, but could not use his hands and could barely move.  Well-meaning family and friends reassured us that everything was fine but mother's intuition said differently.  Riley's milestones became bittersweet as it felt like Maxwell was slipping away in my arms.  I was helpless.  My fear turned to sheer panic as doctors desperately searched for answers along with us.  In May, my husband and I were led to a cold, sterile diagnosis room at Children’s Hospital where doctors confirmed the unspeakable.  Maxwell had a rare, sad, and completely unfair genetic disease that was essentially wreaking havoc on his neurological system.  The disease is too rare for a formal name and is only known by the gene - SLC6A1.  SLC6A1 causes developmental disabilities, a movement disorder and the onset of a debilitating form of epilepsy along with regression between 3 - 4 years.  The solemn faced doctors said nothing could be done as they looked at us with sympathy.  I saw my husband's bottom lip start to quiver.  The prognosis was bad.  It was the darkest moment of my existence.  It was sadness for which there are no words and a sadness I didn’t know existed.  I was robbed of my perfect life, but mostly I mourned for the life I envisioned for Maxwell when I heard his first sweet cry in the delivery room.
 
It was in that moment I decided to fight.  

Fight like I had never fought before.

Fight like a mother.  
 
I left my career and began calling scientists and I found hope.  Maxwell’s disease is a candidate for gene therapy replacement which would restore his neurological system function.  A group of scientists at UT Southwestern in Dallas was willing to develop the therapy that would not only help Maxwell, but every child with this condition.  This research will also directly advance treatments in epilepsy, autism, and schizophrenia.  My husband and I have used our resources for initial funding, but we still need to raise $1,000,000 in the next year to advance treatment from bench to bedside.  If we do not raise the money, the research will be tabled due to lack of funding. 

 We ask for your help today to become part of something larger than yourself.  We have an opportunity here to impact a large group of children that need help. 

 How can you help?
* Every little bit help.  Even $5 inches us closer to our goal.   If you plan to donate, we retain much more of your donation if it is made via our website:  https://slc6a1connect.org/donate-here/ 
* Please share our Gofundme https://www.gofundme.com/slc6a1-connect/
* Sign up for our blog: www.slc6a1connect.org, scroll down and add your name to the subscription box.
* Hashtag us #milestonesformaxwell, follow us on Instagram https://www.instagram.com/milestones_for_maxwell/ and like us on Facebook.
* We are a 501c3 and would like to join corporate giving platforms - our website is www.slc6a1connect.org



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1) Is gene therapy proven?

Absolutely.  Just google the drug Spinrazza for spinal muscular atrophy, Kymriah for acute lymphoblastic leukemia, or the clinical trial for giant axonal neuropathy.   The key for all of these pediatric conditions is early treatment.  Children are being given a second chance.

2) Does gene therapy for SLC6A1 help other, more common diseases?

A mutation in SLC6A1 causes a disruption in the chief inhibitory neurotransmitter known as GABA.  GABA is directly linked with epilepsy, autism, schizophrenia as well as many other neurological disorders.


3) Is my donation tax-deductible?

Your donations are fully tax deductible as we are a 501c3.  Our EIN is 83-1415567.  If you made a donation over $250 you will receive via email and below $249, your credit card records are sufficient. 


4) My employer matches donations. Does it work on this platform?

Please submit your donation for a company match.  Many companies send checks for the match which can be sent to the address below:

SLC6A1 Connect
ATTN:  Amber Freed
2426 South Clayton
Denver, CO 80210


5) Do you have a website?

www.SLC6A1Connect.org:  Please sign up for our newsletter on the website to follow our progress.


6) Where will proceeds go?


All proceeds will go to fund SLC6A1research at UT Southwestern.  We are strictly volunteer based moms working toward a cure.


7) Why is this disease so rare?

The gene that causes this disease was discovered in 2015 and  doctors didn't begin testing for the disease until late 2016.  There are most likely thousands of people with this disease but they don't know they have it.  Part of our mission is to raise awareness so we can reach more patients.
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This update is much better on my blog because I uploaded a lot of pictures: https://tinyurl.com/y6jtllpx

This has been a sad week for our nation, so now is the perfect time to focus on the beauty that can still be found in this world.

In my household, we are obsessed with Luke Bryan’s music, and one of my favorite songs is called, “I believe most People are Good.” My blog today is highlighting all the wonderful people who have rushed to our side in our journey to help Maxwell and other kids with SLC6A1. We have seen the best side of humanity, and I want to express my gratitude.

My little family was struck by tragedy the day we received Maxwell’s diagnosis. All of our long-term plans and dreams were derailed at that moment. Our family’s future became uncertain as I left my career to ensure Maxwell’s future could become more certain. I had no idea what I was going to do, or how I was going to do it, but I was going to try with every ounce of my soul. We put aside fear, pride and our privacy to make our journey public, to create awareness, fundraise and ultimately advance the treatment for Maxwell’s neurological disease and help many others. We had no idea how we would be perceived and it was not easy for us, but we had to do it. We were totally unprepared for the outpouring of love and support that has surrounded and empowered us every step of the way.

Friends I haven't seen in 10 years have made donations to Milestones for Maxwell. A high school friend named Diana has collected thousands of pairs of shoes which will be sold to benefit the foundation. Investors at Janus Henderson, my former colleagues, have become Maxwell's cheerleading squad, making key introductions and mobilizing their brainpower rich office to help my family. Other former business associates have donated rounds of golf and rallied the industry behind us. My friend Lisa has never missed an event, Kris ran a marathon for Maxwell, and Brinton--another former colleague and fellow twin parent--is running 100 miles in September to benefit Milestones for Maxwell.

My friend Bonnie's little girl, Evelyn, asked for donations for Maxwell in lieu of gifts for her 6th birthday, and also made him a beautiful card. A friend that works in public relations has worked tirelessly, and with a mother's love, to facilitate media coverage on our behalf, which has been key for fundraising and getting our story in front of as many eyes as possible. My friend Sarah hosted a large charity hour to benefit Maxwell, and Mark's golfing body organized one of a kind photography prints to be sold to help us.

Enstroms Candy is donating all of their tips for the summer to help Maxwell. Ink! Coffee has created Maxwell's Miracle Blend on our behalf. My church, Denver United, has engulfed us with love. Brad Livengood is a talented photographer that ensured we have perfect photos to send to the media. Lynsi Greer helped create a video that flawlessly captures the essence of our story and our journey (which I can't wait to share.)

Complete strangers are planning events, friends and strangers alike are hosting birthday fundraisers on facebook, and I'm often up late into the night returning e-mails from people who want to help. I've even made new friends along the way, such as Irene who has been instrumental in a number of ways, not the least of which is her hysterically funny personality that keeps my spirits high. Another lovely woman, Sarah, read about our story and reached out, and now she will be hosting a trivia night to fundraise for Maxwell on August 28th.

I could keep this list going for days and days. We have an army of supporters to carry us through this season of life, and the amount of love we have received will make us smile for the rest of our lives. It's only appropriate to end this blog with Luke Bryan's words:

I believe this world ain't half as bad as it looks
I believe most people are good.
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A Big Win For Maxwell

This week marked a major milestone in our fight against SLC6A1. Our dedicated team of scientists produced the gene therapy treatment and are actively treating mice. If all goes as hoped, the mice will show improvement and this data will go before the Federal Drug Administration to approve the therapy for human use.

I have been so nervous that this day would be delayed, that I wouldn't allow myself to get excited. I was at Children's Hospital with Maxwell's developmental pediatrician when I received the e-mail, and when I told her, she burst into happy tears. Another physician came in to celebrate with us, and in that moment the gravity of the day hit me. 

I burst into tears, too.

We have been laser focused in our march forward to create this treatment, and we haven't stopped to breathe, let alone reflect. Today's happy news was a welcome moment of validation, and a reminder that the hard work, endless fundraising, sleepless nights, and agonizing uncertainty aren't for nothing.

Everything is coming together... this is happening!

Thank you all for fighting along with us and giving Maxwell so much love. We have a huge army of loving supporters, and we need every one of you!

We told Maxwell the big news tonight and you can see his reaction for yourself:)
 
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My husband, Mark Freed, is the unsung hero of our little family.

He is a symbol of strength and unconditional love, not just for me and our children, but to everyone around him. On my worst days, he is the calm “voice of reason,” and on my best days, he’s the first to celebrate. Maxwell and Riley’s faces light up with pure joy when he walks through the door at night. Riley immediately asks him to “wrestle” because she wants to be thrown in the air and have her belly tickled.

Mark has made a Friday afternoon tradition of driving her or Maxwell around in the golf cart for an hour while plying them with pretzels and milkshakes, and our friends are always happy to let a golf foursome turn into a golf 4.5-some! Mark has even gotten the twins interested in golf, Penn State football, and watching him smoke meats in the “Green Egg.” Mark loves Maxwell and Riley with his entire soul and is happy to work hard to provide them with a good life, all while demanding very little in return. Toddler smooches and an “I love you, Daddy!” are sufficient for him.

I receive lots of accolades for my accomplishments in driving the treatment forward for Maxwell and other children like him, and many of those accolades come from Mark. In reality, Mark and I are equal partners in this battle for our son–he’s just the quieter half. He’s the person I rely upon emotionally, who kisses the twins’ boo-boos while juggling work, parenthood, and SLC6A1 Connect. I don’t know how he does it! So today, we celebrate our wonderful hero, husband and father, Mark Freed!

We love you, Marky!
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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+ therapy 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.

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.   

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

On a funny note, The Huffpost published this picture of me taking a rest:)

Please read here: https://www.huffpost.com/entry/life-and-debt-searching-for-a-million-dollar-miracle_n_5ced991fe4b0793c2346b0ca?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAALFLBaSt_VdrlmQbLCt6Y4l4hOd8LUuYiWQ9qugheq-_2RjYMlhNN1gJhJAUlqzuF-Sn65o0jVq-p0um--_26792Pyubm8y2F1jfaGkoaSnk83OFiQVv5v9b-CKCPV6Z4YT5qw6BYllPf6o1uu52Jgy-Iexsx7gy_mkAs-yUpCIn
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$573,019 of $1.0M goal

Raised by 2,163 people in 9 months
Created November 14, 2018
Funds raised will benefit:
SLC6A1 Connect
Certified Charity
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Denver, CO
EIN: 831415567
How it Works
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