The story of the parents of 1-year-old twins is enough to break the hearts of plenty. Zohar and Gabi met in Israel. While dating, they would often discuss how they would do parenting. They were always waiting to have kids. To their contentment, they were blessed with twins, a girl, and a boy. They named them Yael & Yoel.
Once while playing with the babies, Yoel rolled on the floor. Zohar noticed a transitory strangeness in the eyes of his son. They consulted too many doctors and pediatrician. At the age of 4 months, the baby was diagnosed with Canavan disease, which results in quick degeneration of the brain and almost causes death. After getting the shock, the parents were overwhelmed with depression.
The baby boy got his first seizure at 10 weeks. Typically Canavan babies lose the ability to hold their heads up. They fail to learn to talk.
The parents then discovered that they were both carriers, means that there is 25% of the child they conceive of being born with the disease. After testing their daughter they found out he had Canavan too.
They consulted and then discovered a therapy which showed some success. But the major challenge was the cost. The family pays $3,000 a week for NeuroMovement which is not covered by insurance since till now it is considered experimental.
In December, the parents request $2M on the fund-raising platform on the Internet, known as ‘GoFundMe’. The mother wrote on the campaign page “We need your help” which was inclusive of pleas in Spanish, Hebrew, and Russian. With the help of donations, mostly from the strangers, the parents have been able to raise more than 1/4th of million dollars in the first 2 months.