Hope for Eliyah
Hope for Eliyah
Eliyah is 3 years old and has Dravet Syndrome. He has seizures and cannot walk or talk. During his short life, he has already been hospitalized over 20 times. Despite all this, he is full of life. He is a beautiful little boy and the light of our lives.
On September 3, 2015 Eliyah went in to status epilepticus, which is a state of continuous seizures. As we were out of town at the time, he had to be flown via helicopter to Sanford Hospital. On the helicopter, the flight nurse had to use an ambubag to help him breathe because of how much medication he had been given to make the seizures stop. We almost lost our sweet little boy that day.
In the fall of 2014, after getting the results of Eliyah's EEG, we were told that due to the increased activity in Eliyah's brain, we had three options. We could increase his seizure medications (he was already on several medications), we could try a ketogenic diet and/or we could try cannabidiol (CBD) oil.
We started Eliyah on the ketogenic diet in April 2015. This means we must use a computer program and scale to make his food. We enter every food that he eats into the program and he has to be at a 4:1 ratio. For example, for every 25 calories from protein or carbohydrates, he has to eat 100 calories of fat, which for him, is mostly butter and coconut oil. He didn't even get to have cake on his 3rd birthday.
Eliyah is on a regimen of medications as well as the ketogenic diet and is currently still having seizures every night. Most recently, he has experienced regression. Eliyah can no longer sit up by himself, pull himself to stand or play with his toys. We have to grind up all his food and thicken his water.
Currently, we live in South Dakota, one of just 11 states where CBD oil is not legal. Last fall we joined with New Approach SD and campaigned for medical cannabis and CBD in our state. We were told we did not have enough signatures to go to ballot.
Then, a wonderful senator, picked up our bill and introduced it to the Health and Human Services committee. After much consideration, the bill was amended to be a CBD only bill for children with intractable epilepsy. This bill passed through the Senate but was recently failed by the House.
We are running out of options for our son. We are asking for donations to help with the cost of medicine, driving back and forth to see his epileptologist at Children's Hospital Colorado and funds to help assist with a move, if it comes to that.
Eliyah has a 10 year old sister, Payley and an 8 year old sister Piper as well as a mom and dad who love him very much and would do anything to help him have a better life. He currently attends special preschool, physical therapy, occupational therapy and speech therapy.
We thank you in advance from the bottom of our hearts as we seek to help our little boy.
May God bless you,
George, Kristin, Payley, Piper and Eliyah Hendrickson
He is a determined little guy; trying to explore by holding on to furniture to cruise around the house! He loves it when his big sisters read him books and will be starting special school again on Monday.
To help us continue raising funds, two of our friends have graciously offered to partner with us to do fundraisers for Eliyah- Dani with Usborne books (Cards for a Cause) and Kelsey with Jamberry nails. (kelseykuik.jamberry.com) Each of them will be donating all profits of the fundraiser to little Eliyah!
I will be taking orders for these one-of- a- kind homemade cards during the month of September and you can check out the fab nails to treat yourself or get a head start on the holiday gifts on the website above or during our Facebook party next week.
I found a quote that describes Eliyah, but after thinking about it, I think it describes all of us. "Say yes to life and life will say yes to you" -Louise Hay
So onward...paint your own rainbow today!
#gifts for a cause#hope for Eliyah
Thank you all for the prayers, thoughts & words of encouragement. We appreciate your support.
He will be given 40 mg of Valium initially & then 20 mg a day thereafter for 2 weeks as an attempt to stop his ESES (electrical status epilepticus). Essentially, this will be stopping & restarting his brain. The hope is that this will end the ESES which is currently preventing Eliyah from learning, remembering new things & possibly speaking.
As a nurse, I know too well the risks of such a procedure- possible intubation, a corpak if he doesn't eat, etc. As a mom, I worry about all the what if's for my little boy. Yet, I also know that without doing the procedure the ESES will not stop on its own & it would at some point cause more regression.
With this in mind, each moment I spend with him is a little gift. I try to capture each smile like a photograph in my mind. I hold him a little closer as he wraps his arms around me to grab my hair. I treasure his beautiful laugh and each little accomplishment he makes warms my heart.
For one thing I know-this precious little boy has already given me much more than I will ever give him.
Thank you for keeping us in your thoughts and prayers as we continue on this journey. #hopeforeliyah#healingforeliyah