My name is Dalles Martin, Lanes mom. We are looking for donations to help with expenses involved in travel to Riley’s children hospital weekly, hotel stays for treatments, and any other medical expenses for Lane.

Due to being postpartum and this diagnosis we are a one person income now.

Lanes story

On March 21st our little baby Lane was born. Healthy, strong, no complications. Our hospital stay was uneventful. We took our baby home after 2 day stay.

On March 26th we had our follow up check in with our pediatrician. Again it was uneventful. Baby boy looked healthy and checked out great. Hours later that day I received the phone call that flipped my world. Our pediatrician called to tell me our in hospital prenatal screening came back and there were major concerns. It came back that our son had SMA, spinal muscular atrophy. I really think I blacked out at this moment. The pediatrician tried explaining to me what this meant. With enough medical background I knew to an extent what all these words meant. When you look it up the first big thing to stick out, death by 2 years old… so many questions ran through my head, would my son walk, would he breathe on his own, would he live any sort of a normal life.

Our pediatrician explained it was very important I get to this genetic clinic asap, she wanted me to leave right then. I was given a direct phone number to a nurse who would help me with details.

My husband didn’t get an explanation he got a phone call full of screaming and crying and to come home now. My toddler sitting at my feet worried about mommy and trying to console me.

When we got to the health clinic every one knew who we were. They didn’t need our name and our nurse met us right away.

Blood work was taken to help us confirm the type of SMA. The blood was then prioritized to a lab in Pennsylvania for testing. The clinic did an amazing job explaining what this disease meant and what treatment option looked like. They sent us home and said hopefully we know in 1-4 days.

The next day we already had a whole team of providers at Riley’s children hospital. We spent the whole day at Riley’s going over treatments getting a physical therapy evaluation meeting our neurologist. It was critical treatment would be started right away.

Lanes results show he is the most severe SMA type one. Now my 5 day old baby would be in a clinical trial. Easter weekend he will begin Evrysdi. A oral medication he will be on for an unknown amount of time. And then asap after many labs are in order he will undergo a gene therapy called Zolgensma. These treatments have shown to make miracles for these patients. Giving us hope for a semi normal life for Lane.

We have multiple monthly trips to Riley to watch for increased symptoms, his neurologist, physical therapy and medication adjustments.

There will be early appointments and some keeping us over night. Any help financially for travel, and hotels would be greatly appreciated.

Only 1 in 11,000 babies are affected by this rare disease.