Back home in France, Doctors thought that Lilas’s delay was probably due to being premature without proper care at birth in the orphanage. They weren’t overly concerned and didn’t see a need to explore further at that time. They thought it would quickly improve with light paramedical care, which Lilas started at 2. At first, she began some small improvement. She began walking at 2 ½ and talking at 4 years old. She still had learning issues due to her cognitive impairment. Feeding herself remained difficult and she stayed underweight, but she had growth spurts at a normal pace. As we continued to notice the increasing difference in the siblings’ development, we decided to increase the paramedical care frequency and began physiotherapy when she was 4, just before the lockdown. After four months staying indoors at home, we noticed a slight regression of Lilas’ global motor skills. Again, doctors didn’t think it could be something we should worry about. As Lilas regained what she had lost during lockdown when paramedical care restarted, we left this anomaly behind us… for a short while.
At 5 years old, after 3 years of constant physiotherapy, psychomotricity, and speech therapy, Lilas’s motor skills still lagged behind. At this stage, prematurity aftermaths only could not explain Lilas’-symptoms anymore. Therefore, we asked our pediatric neurologist to order an MRI scan, which eventually revealed a white matter anomaly. In Feb. 2021 the diagnosis was made: Our daughter Lilas has Alexander disease, and this neurodegenerative disease has no cure.
Lilas was doing quite well until later 2021 when she fell and hit her head, which caused her permanent lameness. Then she had several high fevers due to the flu and Covid 19 through 2022. With each fever, she became weaker, losing her ability to stand and walk independently. New symptoms appeared and remained, like hands and limbs occasional tremors. We spent the whole year in a fog of despair! There was nothing we could do but wait for a future cure. For now, she is slowly recovering some gross motor skills (not all of them) and again is a cheerful little girl. We treasure every family moment!
Lilas is now a strong-willed little girl who loves to sing, dreams of bunnies, unicorns, and enjoys story time. She is always ready to go to the swimming pool, ride ponies and loves to play dolls with her brother Silas! Her learning skills have improved with flute and music lessons. Learning to read and count is a challenge, but she is a resilient young lady ready to do her best.
The diagnosis was a terrible blow for us. After all we had been through with adoption and the hardships our kids had to endure from a very young age, this disease broke into our lives and settled on our head like a sword of Damocles. Lilas’ worsening disability led to her exclusion from dance class and music lessons she had begun two years before. It took us a lot of patience to find really inclusive art schools. Even to keep attending an “ordinary school” was a challenge. As if it was not enough, the fight is not only against the disease’s symptoms, and the final outcome, but also against segregation of handicapped children, which is very strong in French culture, where their educational rights can easily be denied. Lilas has to struggle for acceptance on top of fighting a terrible illness.
Although, we don’t have access to the clinical trial in France, we are hopeful that our daughter will benefit from the treatment if the trial is successful. We would like to meet other AxD families to support each other! Each day we can all four spend together as a family, trying to live as normal a life as possible, and meeting open-minded people, is both a blessing and a victory!
Shared by Lilas’s mom, Coralie