Mateo Servantes Mateo’s Story

First post: Jan 29, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Here is our story:

When Mateo was 6 days old, we got a call no parent wants. Mateo was diagnosed with a rare hereditary disease called Spinal Muscular Atrophy (SMA). We were very caught off guard as neither mine or Marcus’ family has any history that we know of.

SMA is a form of Muscle Dystrophy. SMA is a genetic disorder that starts in the central nervous system and affects all the muscles in the body. Due to the degenerative nature of the disease, people with SMA will experience a decline in muscle strength over time, although the rate and severity can vary by person. SMA is caused by a lack of spinal motor neuron (SMN) protein. This protein is key for muscle development and movement.

Mateo was born missing the SMN1 gene that produces these proteins. Our bodies naturally have a “back up” gene called SMN2 that can produce what they call “copies” in place of SMN1. Depending on one’s genetic make up, you may have 0-6 of these “copies.” Based on the number of copies, there are different severity of symptoms and are then classified as a “Type” of SMA (0-4). Type 0 typically does not make it to 6 months. Type 1 onset before 6 months and unable to even sit. Type 2 onset between months 6-18 and can sit but not walk. Type 3 onset of childhood after 1 year of age and can walk. Type 4 typically has a delayed onset of 30+ years old and live a mostly normal life.

We have been at Valley Childrens Hospital constantly since the day of his diagnosis doing tests to understand exactly what this will mean for our Mateo. Out of pure luck, Our local Valley Childrens Hospital is one in the nation that is running a clinical program specifically for SMA detected in Newborn DNA screening. The clinical trail has been active for 18 months and includes a new drug, Zolgensma, on the market that has been being tested for 5 years and is now approved by the FDA for treatment of SMA In Newborns. Successful treatment with Zolgensma could likely mean no symptoms for Mateos entire life.

We had to undergo many tests to determine Mateo’s number of “copies” and now know he has 4. This means he is likely a Type 3 or 4. Although you cannot know their true # Type until symptoms begin which we hope to never get to. So… he needs treatment to prevent symptoms.

We are now in the stage of approval for treatment. This has been tough on us, the treatment requires very specific blood test results determining his kidney, heart and liver can handle such an impactful treatment to his little body. It also requires his antibodies to drop low enough to not reject the treatment and it requires approval from insurance as the one treatment alone is $2.3 million. We have gotten good results back so far regarding his body being capable but unfortunately my insurance declined the treatment citing that it was “experimental” by their standards. It’s heartbreaking to have an insurance be able to tell you that about your babies life but that’s where we are. We’re now going through the appeal process but with this and due to the cost of this specific treatment, we will be responsible for a significant out-of-pocket portion.

With that, once we get to the point of treatment happening (we only have his first 6 months) then there is all that comes within that. Mateo will be in the hospital for some time but then home with us. However, we were told he can not go to any type of public care until after 6 months due to how impactful this treatment is and the compromise it will have on his immune system. Additionally, we will have weekly hospital visits during that time so my hope is to be able to financially cover the time to allow us both to be home with him.

With Mateo approaching 3 months, we have a very limited time to figure this all out. It is with heavy hearts that we choose to share this and allow people to support us. Thank you for reading our story and helping in any way you can