We are asking for the love and support of our community as we continue to treat a very rare type of intractable epilepsy. Luca needs and has needed 24-hour care since birth and we are both exhausted after 5 years of continuous medical treatments and in-home care. We do not have family and extended family in California with us, and it has become increasingly challenging for us as time has gone by.
Please support Luca, Najib, and Jill as they take some much-needed time to be together as a family and step back from all of their daily demands to focus on Luca’s healing, treatment, and care. Currently, they are finding the best treatment option for Luca may be a second surgery at UCLA. They just went through a week-long stay at UCSF, which required a lot from them and their team.
Since Luca was born, Jill and Najib have spent countless days and nights in the hospital with Luca, affording him the best treatments available. It has taken a huge toll on both to hold down jobs, manage complex medical needs, continue with many hospital treatments, and give him round-the-clock care at home.
Luca has a very rare form of epilepsy which is very hard to treat. He often needs emergency care for seizures. He lives with visual impairment, and in 2022 underwent a long brain surgery, which helped immensely but did not stop the epilepsy. He often needs emergency care.
The long-term nature of living with a chronic illness has been hard. Luca suffers from infantile spasms, intractable epilepsy, visual impairment, autism, and IDD. These parents face burnout and are in need of some time to take care of themselves and their small family, without the constant pressure of delivering at work and managing a long-term and medically complex illness, while providing 24-hour care for Luca.
“It is not easy to reach out for help from our community, but it is clear we can both use a chance to step back a little from juggling all of the things over and over. This will be such a needed blessing.” – Jill
Please consider donating to offer some relief and contribute towards Luca’s medical expenses and care. Jill and Najib sincerely appreciate your support. For all they have done for their communities, it is now our time to hold them for a bit. Anything helps. They are also open to other ways to support which are not only financial.
Any funds donated will be used to clear a number of medical bills outstanding, out of pocket expenses for a medical stay this week, and an upcoming UCLA treatment stay. Beyond that, funds will be used to support us both in taking work breaks this summer to take some time to rest and renew ourselves so we can keep showing up for our family.
