Amy and Elijah

Tell us your story.

My ex-husband has brain cancer. They took out part of his brain, and he forgot who we were. So now I am a single mother of 10 kids. Five are adults, and five are still at home.

My youngest son Elijah is terminally ill. He turns four on January 5, 2022. He is the happiest person I know! When Elijah was three months old, I found out he was deaf. The next few weeks and months would blur together as I received life-altering news that our precious little Elijah had a very rare brain malformation called Lissencephaly. They said he wouldn't live to be two. I decided that day that I would give him the best God-filled life we could. I took the six kids I had at home and drove 13 hours to the ocean. We saw the sea for the first time, and my kids were baptized in it. This is where I told my children that Elijah would not live a long life. That's when Elijah's Baby Bucket List was born!

We take Elijah on adventures and show him everything he should see before he goes. Lissencephaly means "smooth brain" and affects all aspects of Elijah's life. He cannot sit or stand, talk, or do anything for himself. Daily, Elijah struggles to control his body movements most of us take for granted but is learning how to roll over and trying to sit up. He laughs so hard and can brighten a room in seconds. He is on several different medications to control his seizures and is watched closely by a team of specialty doctors and services. Elijah receives a variety of physical, occupational, feeding, and developmental therapies weekly to help him succeed in any way possible. The lifespan of Lissencephaly is typically 2-10 years.

We do not know what caused this rare malformation. We've done genetic testing, and we didn't find anything except for one different letter in a sequence of his DNA. He is the first with the mutation. Making him even more precious. Since his diagnosis, we have felt so much peace and covered by the Lord and trust in His plans for Elijah. We've learned to pray a whole lot, laugh a whole lot, lean on our church family and friends for support during the rough times, and always show the joy Elijah brings into our lives by sharing his baby bucket list to raise awareness for rare diseases.

Elijah's siblings are amazing. His 10-year-old sister started her own lemonade stand so she could take Elijah to Paris to drink lemonade and see the art! After Covid, she could not sell lemonade anymore, so she learned to build websites and started her own online business so she can fulfill her promise to him. lemonadeinparis.com We also started an adaptive equipment closet for special needs families and therapists who need it regardless of insurance coverage or the ability to pay!

Please feel free to check out our Facebook and Instagram @elijahsbabybucketlist and @LimitlessElijah'sEquipmentProject.

Where is your favorite place to use your FreeArm and why do you love it?

On our bucket list adventures our FreeArm Muscle makes feeding on-the-go so much easier! We also use it at home, almost every time Elijah is fed. This has made my life as a single mom with a special boy so much easier! 

How did you tube feed before the FreeArm?

I would have one of Elijah's siblings hold the tube and one hold him while I poured his feeds in the syringe.

What would you like to say to other Tubie families or individuals?

The FreeArm will change your life. It takes so much of the hassle and stress of feeding on-the-go out of the equation. Before the FreeArm, I had to find a place to set-up things and have an extra person to help me bolus feed Elijah even at home because our IV poll doesn't hold a syringe.

What advice do you have for a Newbie Tubie?

Find a community of people who are walking through the same thing you are going through. They know all the tricks and are a light especially when things are hard or you don't know what to do. We are braver together!