Group Chat Epilepsy Awareness and Research

We are raising money to help Dr. Hussain and the team at UCLA continue the research to help kids with infantile spasms- a form of epilepsy. They have done great things for Maverick over his two year fight, and are giving him a chance to live a great life. Since November is Epilepsy Awareness Month, we wanted to gather donations for research, however if you can’t contribute even the simple sharing of information surrounding the disease and epilepsy in general will help end the stigma and we would be forever grateful. Let’s tackle this Kathys!

Below is our story in more depth from our first fundraiser for Mav from a year and a half ago:) 

Maverick was diagnosed with infantile spasms in February of 2019, and unfortunately had a relapse at the end of May. He has undergone 2 four week courses of a extremely heavy dose of a steroid to hopefully eliminate the spasms entirely. We are hoping and praying that was the last round of treatment he will need!

Maverick is in a small subset (approx 10%) of children diagnosed with infantile spasms that does not have a brain mass, brain injury, or known structural brain abnormality/genetic disorder. Although counter intuitive, not knowing the cause of the spasms is often the best case scenario in effectiveness of the treatment. There are approximately 2000- 4000 new cases in the United States each year, and approximately 10-12 cases a week come through UCLA alone since it is renowned for their aggressive treatment. These figures hardly seem insignificant, yet 9.9/10 people we asked had never heard of infantile spasms. 

It is VITAL to begin a course of treatment as soon as the onset of the spasms occur, which is why the lack of knowledge surrounding this diagnosis is frightening. The symptoms are often so slight that it would be easy to overlook them over the course of a few weeks or even months which could be devastating. Sadly, 80-90 percent of kids diagnosed with this condition suffer devastating results irregardless of treatment.

This has been a very scary and stressful time for us as new parents to say the least. We are so grateful for the family and friends who have been so supportive and have shown Mav so much love. We are incredibly lucky to live in a first world country where medical technology and treatments are readily available. We are luckier to have health insurance that covers the countless overnight EEG's and hospital stays, his physical and occupational therapy, his acupuncture, as well as ONE of the drugs he is on which would cost roughly 15k a month without insurance. Its abhorrent to imagine a family that is unable to afford insurance and subsequently these drugs/treatments. 

Most of all though, we are extremely fortunate to live in Los Angeles, just a few miles away from Dr. Hussain of UCLA who is leading the charge in both the research and treatment of this specific epileptic disorder. 

The amount of time he has spent going over Mavericks condition with us to explain and take the time to comfort us as parents has been invaluable.  Every question we have had has been met with a thoughtful and incredibly knowledgeable answer. We cannot put into words how grateful we are that Maverick is under his care, which is why we wanted to try in a small way to give back. 

Dr. Hussain is known worldwide as being one of the most well versed on infantile spasms as a subset of pediatric epilepsy specifically, which is why we chose to give back to his research directly and the UCLA medical facility that is tackling this each day. 

We would sincerely appreciate any donations you are able to contribute to this gofundme of which 100% of the proceeds will go directly to the UCLA Pediatric Epilepsy Program. This is something we are passionate about, and we truly believe we can make a difference!

Dr. Hussain responded, when the question of another possible relapse for Maverick was posed by us, that "whatever happens we will take it head on". And we absolutely will!  When we asked him what else we could possibly do, he responded to "bask in the glory that you have a seizure free baby each day that you do".  Lots of kids out there still need our help guys. Please donate, and help us spread the word so hopefully one day all babies can be seizure free. xx