Our daughter Lucy was born last May (2019) and she was born with a rare neurological disorder that causes severe life threatening seizures. Her particular disorder is so rare that we are only aware of approximately a few hundred other children world wide with it. Lucy is only one of a few that is without full symptoms and this has given me so much hope.
This particular disorder is called Hemimegalenscephaly. It means her left side of her brain is larger than her right side of the brain. There is also cell mutations that attributes to this causing the seizures to be so severe. For most of these kids (except Lucy and few others) the only hope for relief is 3-4 seizure medications or a hemispherectomy which is a brain surgery removing portions of the brain lobe. A lot of these kids have had multiple surgeries because the seizures just keep coming back. Lucy has traveled and while our primary care is here in Colorado (she has a Neurology Team, Cerebral Palsy Team, GI team, Physical Therapy and Occupational Therapy Team) we’ve been to Cincinnati Ohio to meet the rare specialists for infants with this disorder. They’ve given us hope and they are the ones whop have led us to our next journey in Seattle to learn more about preventive care (so far this can not be cured) and Seattle were the ones who wanted to follow her. They want to include her as a case study because they can not understand why she is doing so well. Seattle is hoping with this study on why she is doing so well she can help others like her. She is only on 1 seizure med and at almost 13 months old she has not had a seizure since she was 1 1/2 months old.
All of this truly turned our worlds upside down. It included so many changes and adjustments. I am still practicing Massage Therapy but I now work full time as her care giver and go to school full time to eventually become a Nurse. In the meantime my Major and Minor has changed to Sociology and Communications until my schedule is more flexible to fulfill the desire to complete nursing. I hope to use my Soc and Comm degree to better help me run this Foundation and advocate in all the ways possible for as many kids possible in Colorado. My dream is to make this a Nation Wide Nonprofit. For now we are serving families here in Colorado.
So, with that all being said. I have shared her story. I advocate like none other as we were turned away from the hospitals while she was visibly seizing being turned away told she was fine. They said it was “normal” and to be honest Lucy’s diagnosis has been terrifying and hard on our family as a whole including her siblings. Especially the older siblings. I truly believe there is a reason Lucy chose us. We don’t want to just help her. We want to reach and help so many others.
I started this NonProfit, to help cover a variety of things. I want to bring more awareness to infantile epilepsy. I am working on a book with other parents of disabled kiddos that I would like to donate to all parents in NICUs nationwide no matter their child’s diagnosis to help them cope and not feel so alone and scared. I want to start publicly speaking and offering support to parents to encourage them to advocate and fight for their kids as we were shot down and disregarded when we knew something was wrong. To this day we are still having to advocate incredibly hard as we are not always “heard” with our concerns until we respectfully and tactfully press harder. A lot of people are intimidated to do such a thing. I want to teach others not to be. I would like to be able to bless 1 - 4 local families a year with an epileptic alert service dog as Lucy was blessed with one from an amazing local breeder and now forever family friend. The sense of security it offers is something I can not describe. I also would like to provide support to siblings of kiddos with epilepsy and a retreat for the parents. Sometimes we forget about them and I think a quarterly event for the kids where they can just be kids with kids like them can be so helpful offering them additional services while there if needed but making that moment about them and not their sibling’s disorder. For the parents, an annual retreat helping them take a breath. Learning coping and advocacy tools. Meeting others who are so much like them. There are so many organizations out there for the child/person with the disorder but there isn’t a ton of support for the WHOLE family which I think is so important for everyone including the one diagnosed.
So I am asking for help. For a donation. Or your time. To share. Talk about. Support this. Gary and I sat on this for awhile but we have so many people who want to help. We are starting from scratch. We are relying on you all to help. We will reach to local businesses and work closely with other non profits. What I can tell you for sure is we know once we get this off ground it’ll be huge.
Chive Charities blessed us with 27k to fulfill Luna’s (our service dog) training. A couple who we consider angels to us walked in one day, within a few days of me telling Chive charities we would no longer be able to use the 10k they could donate as the original company we were going to use wouldn't follow through. The extra 17k felt impossible and I wanted someone else to be blessed knowing we wouldn't be able to do it when needed. They asked Chive who they could donate to in need of a service dog. Chive pitched our story and without hesitation this couple donated 17k extra to help offset the cost. I sobbed when I got word. To think we all question how our world can be so cruel and yet we don’t see how truly beautiful and kind it is.
TMJ Doodles (Heather) blessed us with Luna. She has held our hands through so much and has been a godsend. I am so grateful for our story with her.
Guardian Service Dogs took us on as clients as I shared our story of constant rejection with others due to them not being on board with training a dog for an infant or young child with epilepsy.
Talk out Loud blessed us with all marketing material; logos, websites, on top of constant encouragement and support to do this.
Phases Accounting (Debbi) is the one doing our Nonprofit. Without hesitation and in full awe of Lucy the moment I asked she said yes.
Ronnie Haskins with AutoSearch USA , Johnathon Thorpe with Mirror Image Detailing , The Cordosi Family with Scentsy and their moving company, Savannah with Mama Boosh (t-shirts) and Matt Surma with Edward Jones all donated to Lucy from their businesses to help us offset our travel expenses. We had so many friends and family donate and purchase Lucy Swag to get us from Point A to Point B. We have been so blessed y'all. More than anything I want to bless others and let them see they aren't alone. They can get through it and even when they are told things are impossible, The Impossible is ALWAYS Possible.
Here is Lucy’s page if you’d like to learn more and follow her story. Now for 2020 I want to make this more than just about her. I want to help all that we possibly can in Colorado, eventually Nationwide.
www.facebook.com/LucysHMEJourney/
We appreciate you and your time you are giving us. I look forward to catching up with you all! Thank you for following and supporting our journey.
