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Meet the parent: Sophie Hartman, mom of 2 (soon 3) busy girls, one with a rare disorder



Sophie Hartman with daughters Carmel and Miah.

Family photo

 

Sophie Hartman is a published author and the adoptive mother of Miah (pronounced Mya), a 10-year-old gymnast; Carmel, a 5-year-old lover of horses; and Leya (pronounced Leia), a 9-year-old whose arrival the family is eagerly awaiting from Zambia.

Carmel has a one-in-a-million, progressive neurological condition called Alternating Hemiplegia of Childhood (AHC). The family lives in Talbot Hill, Renton, but can often be found at Little Bit Therapeutic Riding Center, a nonprofit organization in Redmond providing adaptive horseback riding and hippotherapy to create positive changes in the lives of adults and children with disabilities. (Read Sophie Hartman's story: A girl, a horse and a grateful mom: the amazing power of hippotherapy)

 

Where might parents run into your family around town? 

We frequent Little Bit Therapeutic Riding Center, obviously. We are also at Metropolitan Gymnastics in Kent daily. We attend church at The Pursuit NW. We used to live in Redmond, so we still often make the drive to go to our favorite restaurant, Kinishka Indian Cuisine. We also love Boon Boona Coffee in downtown Renton. Our favorite park is Grass Lawn Park (Redmond), but the girls also enjoy Thomas Teasdale Park in Renton. We order pizza from Pizza Dudes in Renton, too.

 

Can you share a little bit about Alternating Hemiplegia of Childhood? 

Currently there are only around 900 cases in the entire world -- with no real treatment options, and tragically, no cure.  AHC causes Carmel to have episodes of complete paralysis, extreme pain, and cognitive regression that range from mild to life-threatening. Episodes can last for minutes, to several weeks at a time (she has them daily). AHC has been likened to a human time bomb, because we never know when these episodes will happen or how bad they will get. She has a host of other medical conditions accompanying AHC, and she depends on the use of a feeding tube and other implanted tubes to survive. 

 

Why did you decide to take Carmel to Little Bit Therapeutic Riding Center? What do you love about hippotherapy?

Carmel loves animals, and she is most able to relax and avoid episodes when she is with them. I knew hippotherapy would be a great fit for her, but even so, it has surpassed my expectations completely! Truly, so amazing.

We absolutely love Little Bit, and the staff and volunteers there are just so amazing. Christina, Carmel's OT (occupational therapist) that works with her, is so dear to our hearts and truly works beautifully with Carmel. What I love most about hippotherapy is that it doesn't feel like therapy, it feels like family. Carmel has grown so much in confidence and in strength, and it has happened without her even knowing she was working on those things. Her love of horses, the incredible environment of safety and belonging that the Little Bit staff facilitate for her, and the joy of each session truly has made this part of our week the highlight each week. 

It is amazing how this "non-traditional therapy" has yielded the greatest outcome in not just my daughter, but our entire family. We are so very grateful.

 

Is there anything you're working on personally, as a parent, or professionally that the Seattle's Child community can help with? 

I continue to work hard to champion my children and raise awareness for Alternating Hemiplegia of Childhood. Fighting against rare disease is brutal and much of the burden falls on families personally affected by AHC. Without awareness, research, and funding, there will be no cure for children like Carmel. More at: http://cureahc.org/

 

 


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