Nusaiba is a very happy 5-year-old child who demands love and affection. She has no interest in toys or objects. She just loves to be around people. Sometimes she does like to pretend-play cooking with pans and pots.
Her personality is very friendly. She likes to share her toys with everyone but her little sister. She always wants her sister to be around her, but no sharing.
Nusaiba was born 18 days early. She was born underweight -- only 4 pounds 11 ounces.
She was late at reaching her milestones from the beginning. She was able to sit up properly after she was 9 months old. She couldn't walk until she was 18 months old. Her first words came after she was 1 year old. We didn't really worry too much because family and friends kept on saying every child is different and some just are slow in the beginning but will eventually catch up.
After her second birthday, Nusaiba started to tip toe and started having gait issues. She started PT and when she was 3 we gave her Botox and AFOs. Her walking was getting worse and worse. We repeated the Botox and did serial casting. She did walk for a month or two, but then started to lose balance and began to crawl. She just crawls now at home and sometimes uses a gait trainer at school. She is extremely spastic on her both legs.
Her few words that she had were also disappearing after her second birthday. She had an MRI, lot of genetic testing, but no result tied to her actual disease.
She also had her first episode when she was 26 months old -- only for a few minutes. We had no clue what was going on. We put her to rest, and she woke up normal. Then she started to have her episodes of drowsiness every six months and gradually it started to happen every day where she cannot open her fists, she keeps on stretching her body, she loses control of her head and cries. These episodes only occur to Nusaiba between 11am and 2pm. So far, I have never seen it happen in the evening.
At around age 3.5 years, doctors gave the diagnosis of Cerebral Palsy. No doctor could figure out what was happening and why Nusaiba was regressing. She has been taken to so many doctors. After revisiting the genetics team when she was 4.5 years old, we were offered to have the exome test done and a few weeks later, a genetic counselor called with the results and diagnosis of all her issues --TANGO2.
She has never had seizure or metabolic crisis until her 5th birthday on January 29th of this year (2022). Our poor girl had to be in the hospital on her birthday due to her first seizure in life. She was unresponsive for almost 19 hours.
It has been challenging to raise her. It’s very challenging when a person is both physically and mentally hit hard. Being nonverbal makes it even harder. Every day is a test for me and my family now. Her smile does help to wipe out the pain that we have to go through.
I pray and I hope there will be a cure out there soon where my daughter will be back on her feet and will not have any of the pain that she and other TANGO2 patients are going through. I’m hoping for that miracle to come for us.