Help baby Ben’s fight with SMA

Ben Kutschke was born on June 4, 2021 and he was perfect and healthy.

Just after Ben turned one-month old in July, he started having difficulty bottle feeding. Milk would spill everywhere, and he would cough and cry. Liz and Steve, Ben’s parents tried different bottles and nipples, but nothing was effective, and the slow flow options exhausted him.

At his two-month appointment in August, his pediatrician noticed that he had low muscle tone and wasn’t meeting most of his milestones, such as lifting his head and recommended Ben start physical therapy as soon as possible.

At three-months, Liz and Steve brought Ben in to ask for a swallow study so he could start feeding therapy. They worried he was aspirating formula and hoped the study would give them answers. At this appointment Ben’s pediatrician was very concerned as Ben’s muscle tone had worsened over the past month, despite weekly PT. She connected them with Dr. Saunder M. Bernes, MD, a pediatric neuromuscular specialist at Phoenix Children’s Hospital. They received an appointment instantly.

On September 9, Ben and his family met Dr. Bernes. Ben was admitted to the hospital during the appointment and given a working diagnosis of spinal muscular atrophy type 1.

Spinal muscular atrophy (SMA) is a rare genetic neuromuscular disease that slowly kills motor nerve cells in the body and affects the muscles used for activities such as sitting, standing, walking, breathing, and swallowing.

Test results have now confirmed the diagnosis.

The good news is this devastating, progressive, and rare disease has three new treatment options to stop the disease from progressing and help reverse some of the existing damage.

Ben’s medical team has submitted a request to their insurance company to begin genetic therapy with Zolgensma, a new and very effective treatment. Before they can treat Ben with Zolgensma, his antibodies need to lower for the treatment to work. In the meantime, he’ll begin with the oral medicine, Risdiplam.

Risdiplam costs $365 per dose and must be given daily for life. The gene therapy, Zolgensma drug is the most expensive, single use drug in the world at 2.1 million dollars, making it a fight with insurance to get it approved. But if Ben doesn’t receive this treatment, his condition will continue to decline.

Until these medicines became available a few years ago, most infants with SMA Type 1 didn’t survive past two years old.

In addition to the gene therapy, Ben requires OT, PT, feeding therapy, and pulmonary therapy sessions on a regular basis. His hospital bills, therapy sessions, medicine, and time off work for his parents are daunting to say the least.

We are asking for help to get Ben’s story out to the public and raise the funds necessary for his medication. It is important that Ben receives this treatment ASAP so he can remain mobile, which is very important to his survival. Please help Ben and the family receive this lifesaving, life-changing treatment, any amount will help!

The family is asking for prayers for Ben’s journey and for all the babies and adults battling this disease.

Thank you for your support, prayers, love, and kindness.