Dear friends and family,
Bindi and Ramneek were so excited to invite Jujhar to this world and join his big brother Zorawar. After a month back and forth between home and the NICU, they were finally able to bring premature Jujhar home to spend time with his family. The time with family was short lived though, and in August, Jujhar began having ongoing seizures. Jujhar was in the ICU again for over a month, while doctors tried their best to stop his continual seizures. Finally, in September, Jujhar was diagnosed with Menkes Syndrome, an incredibly rare genetic disorder that affects only 0.001% of newborn babies. Menkes Syndrome is a terminal disease, and without treatment, children die before they are 3 years old.
Jujhar has been accepted into a clinical experimental trial that may extend his life longer, allowing him and his family to spend more time with him and gives him the chance to experience more of life on this earth. Between traveling across the US for the clinical trials and taking care of their three year old, the Singh Family could use some support. We’re fundraising so one parent can stay home to care with Jujhar while another parent works, and the family can afford to travel to the clinical trial.
We thank you for being part of the Singh Family’s journey and appreciate any support.
Fundraising team (2)
This team raised $9,899 from 110 other donations.