Help Levi Get His Medically Necessary Safe Sleep Bed

I am reaching out to share the story of my 2-year-old son, Levi, who has bravely faced more health challenges in his short life than most of us can imagine. Levi was born with a rare condition called a laryngeal cleft, which required surgery to repair. In addition to various surgeries for this, he has been diagnosed with gastroparesis, a chronic condition that causes his stomach to have difficulty emptying properly, leading to painful flare-ups. As a result, Levi requires a G-tube for feeding. Unfortunately, he tends to pull out his tube frequently, which adds to the stress and medical complexity of his care. In March, Levi will undergo yet another surgery, this time to again try and help the symptoms from his gastroparesis.

We have been working with Levi’s primary care doctor and a team of specialists, including his GI doctor, ENT, occupational therapist, and feeding therapist, who all agree that Levi needs a safe sleep bed to ensure his health and safety. Even Medicaid has acknowledged the need for a specific enclosed bed for Levi, yet after nearly a year of fighting through the appeals process and facing denials from both Medicaid and the durable medical equipment company, we have not been able to get coverage for this essential item. We have reached out to ample sources, funding options, and even attempted to utilize Children’s Special Healthcare as a secondary insurance to no avail. We are in the process of a filed grievance to get this process moving more so.

Levi currently sleeps in a crib that he frequently breaks apart due to his activity and sensory disruption level, and the challenges associated with his G-tube make it a very unsafe sleep environment as he likes to tangle himself in the tubing and cords to his feeding tube and pump. As a mom, my top priority is keeping him safe, especially during the night when I can’t always be there to monitor him. After exhausting all our options, using 24/7 motion detection cameras, breathing monitors such as Owlet, and even sleeping on his bedroom floor at times — I am turning to my village and the community to help us purchase an alternative enclosed sleep bed. While not the same model recommended by Medicaid, it will provide Levi with the safety and comfort he needs, giving us peace of mind until he is older or until the final approval of his official medical safe sleep bed.

The cost of this bed is still significant to our little family, but your generosity can help us bridge the gap and provide Levi with the safe sleeping environment he desperately needs. We have exhausted our insurance options and are now relying on other means for this.

Thank you for taking the time to read Levi’s story. Your kindness means the world to us!

With gratitude,

The Marsh Family