Currently, there is no cure for either DDX3X or for Clara’s white matter brain disease (leukodystrohy / leukoencephalopathy,) but that does not mean treatment isn’t necessary. In fact, it’s a big part of her journey now, and always.
Many treatments can help Clara become stronger and more stable / balanced on her feet. Some interventions may even help her learn new skills, at her own pace.
Learning to communicate is a major focus as well. Many children who have DDX3X Syndrome are non-verbal. The same holds true for those with white matter disease. Clara is not non-verbal, but has not developed much new speech (either verbally or sign language ASL) in the past several months, so we are focused on trying to help her maintain the communication ability she has and increase it if possible.
Luckily, while the schedule is very full, most of this seems like play and Clara loves her therapists, with whom she has developed a very special bond.
Clara’s interventions include:
* Physical therapy (both traditional and equine) to increase balance, flexibility, mobility and core strength
* Speech therapy
* Auditory Verbal Therapy (AVT)
* Deaf & hard of hearing support
* As much swimming as possible to maintain flexibility
We are thrilled Clara has recently started jumping with both feet off the ground at the same time. She, we, and the treatment team worked on this daily for almost 5 months before she victoriously accomplished it. #GoClaraGo!
Running is a challenge because Clara has balance and gait issues, so she “gallops” and gets around pretty quickly, very determined not to miss anything.
Clara has about 50 words and ASL signs, and a very contagious giggle. She LOVES to sing, and can string together many many words in song which she does not do in speech.
So, we do a lot of singing! Clara finds singing songs with people to be a very effective way of connecting. We are seeking someone in Los Angeles who specializes in Melodic Intonation Therapy for children. It’s well documented that stroke victims often learn to speak again through singing because singing accesses a different part of the brain than speech. We believe this is a true potential for Clara. She can most certainly communicate through song in a way that she cannot through speech.
Clara also loves swimming, climbing and animals, specially horses and dogs. She has a great time dancing, and is so happy playing and discovering things with friends at her nursery school, Cottage Co-Op Nursery School which has been such a wonderful part of our journey. She loves being around other kids, and certainly pays close attention to the things they can do, so she can try, too. She is a very determined child, which serves her very well given the challenges life has put in her path.
Most importantly, through it all, Clara is still Clara – the happy, playful, and joyous child who wins everyone’s hearts.
Clara is writing her own story, the only one like it in the world. She is pure joy.
#TeamClara