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.  


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.

Categories: Community

SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.


Kam · May 2, 2019 at 1:34 pm

Amazing, thank you for sharing. Such love

Ann Cozad Jansson · May 2, 2019 at 4:19 pm

Max and Riley are lucky to have each other and even more lucky to have such wonderful parents!!!!

Harriet Renner · May 2, 2019 at 7:21 pm

What a beautiful tribute to Riley. I am sure she does know the there are problems with her sweet twin brother, Maxwell. You have a beautiful family and will be blessed for being such loving and caring mother. Much love, Harriet Renner

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