Aubrey May was born near Houston, Texas in September of 2011. Her parents are David and Angela. She was full term and healthy at birth. When she was four months old her paediatrician noticed vision impairment. Aubrey had extensive testing and there was no medical explanation for her vision loss. As she got older she did not meet any developmental milestones such as sitting, standing, talking, using her hands and other interactive behaviors. Aubrey developed twitching and spasm movements. For the first several years of her life doctors were not able to provide a medical explanation for her condition.
In March of 2015 Aubrey had her first seizure and was diagnosed with epilepsy. Since then her seizures have varied from weekly to monthly and are controlled relatively well with medication. In May of 2015 Aubrey was diagnosed with the DNM1 genetic mutation. Unlike some of the other DNM1 cases, Aubrey’s mutation was inherited from Mosaic parents which is extremely rare.
As of October 2016 Aubrey is enrolled in preschool through her local school district. She also goes to private therapy weekly with NDT certified Physical, Speech and Occupational therapists. Aubrey has a feeding tube but she continues feeding therapy to work on oral feeding skills. Most of her healthcare team is in the Houston Medical Center and are affiliated with Texas Children’s Hospital. She has made phenomenal progress over the past five years. She is blessed with wonderful and experienced teachers, doctors and therapists that help her and encourage all of her family.
Aubrey loves swimming, riding on her dad’s boat, playing outside, music and most of all she loves playing with her baby brother, David Wayne. She brings immeasurable joy to her family. She teaches them daily lessons in patience, love and learning to communicate without words.
We want to spread our message of hope to others as we continue on this journey.
“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.” – E.M. Forster
Written by Angela Dusek (October 2016)
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Karla Matić was born in Dubrovnik (Croatia),in May of 2014. She lives with her mom and dad, two elder sisters and brother. She was completely healthy when she was born. When she was 6 months old, we noticed somechanges in her motorical abilities, perception and she was indifferent towards everything. Then we ran hundreds of tests. She was diagnosed with epilepsy. Her seizures are under control with medications. She also has muscle hypotonia. In August 2017, Karla was diagnosed with the DNM1 genetic mutation. She is 4 now and she doesn’t walk, talk and she doesn’t make eye contact. She is making slow progress while working with her physiotherapist and therapist. She is adore little girl who likes music, playing with her siblings and she adores cooked food. In February 2018, she started to show self-destructive behaviour by constant crying and rubbing her hair. We ran plenty of tests, but everything is fine on her EEG and MRI. We continue to work with her and we know she’ll make a progress, but we would like to kniw if anyone of you dealt with this self-destructive and aggressive behavior. If you want to share with us your experience, please contact us on e-mail address: email@example.com