January Featured Alexander Disease Patient
Mila was born a healthy baby. Nahed and Gil Sarig were thrilled as they had experienced several miscarriages while trying for a second child. Mila’s arrival was truly a blessing.
At first, Mila was a very easy baby, eating and sleeping well. Around 6 months old, Nahed noticed that Mila was constantly congested and not progressing at the same pace as her older sister. Mila underwent an adenoidectomy to help relieve her congestion but still struggled developmentally. Her parents thought that she would catch up after she fully recovered from surgery.
Mila made a lot of progress after the surgery, but she was still not crawling, not repeating words, her play skills were behind, and her core was very weak. Nahed and Gil decided to take Mila to a neurodevelopment specialist who suggested an MRI which revealed “a change in white matter” The Dr. gave them a paper from 2003 about Leukodystrophies and told them not to look online as it is “horrible and he couldn’t tell them exactly what disease Mila had” Nahed said “We were in total shock! The first thing we did was google Leukodystrophies and the most terrible words popped up like degenerative, and short life expectancy” The next couple of months were agony. On August 7th, 3 days after Mila’s second birthday, they received the AxD diagnosis. “Needless to say, our life fell apart that day…. we didn’t know that there is hope!”
Determined to learn more, Nahed and Gil read everything they could about AxD. They talked to Jenny at Elise’s corner who was able to offer some good tips and a glimmer of hope. They also learned about Dr. Waldman and immediately decided to travel to CHOP. That trip and meeting with Dr Waldman changed everything.
“There is now hope! We can go to sleep knowing that a lot of people care about finding a treatment, and they are working very hard to make it a reality. We understand that AxD is a spectrum and each child will develop differently. It is nearly impossible to forecast any kind of definitive path or life expectancy. All we can do now is enjoy our child and provide as much therapy as she can take. “Nahed Sarig
Mila has a magical smile and a magnetic personality! She is a happy little girl who attracts attention wherever she goes. She loves music, nursery rhymes, chocolate, playing with her sister, Ella, and kids of all ages. She also enjoys watching Mr. Tumble, Peppa Pig and Blippi. Whether Mila is fixing dinner in her play kitchen or collecting “stuff” in her numerous bags including mum’s bags (purse,) she does so with determination! Mila knows what she likes, and it is tough to get her to change her mind; a trait she gets from her strong mom!
Currently, Mila does not need many medical treatments apart from her OT, physio, and speech therapy. She has had a couple of seizure like episodes, but no major incidents. Her parents feel better equipped to deal with any issues that may arise. “Living with Alexander Disease is an extremely difficult journey and most people often don’t understand what we are going through. The disease has changed our outlook and made us more aware that life can just end or change in a second. The most important thing is to enjoy our little Mila and live today to the fullest!” Nahed and Gil Sarig
The Sarig family is supported by their own little village which they would like to thank from the bottom of their hearts (OT, Physiotherapist, Speech Therapist, fantastic nursery staff, amazing nanny and the Pre-school team in our borough).
Gil and Nahed believe that a cure will only happen if parents, patients, researchers, and all charities involved keep working hard to raise funds and awareness. Because each Country functions differently, it is critical that people from all countries unify in our efforts. They are grateful for the leadership that advocates in the U.S. have shown to move closer to a potential treatment.