Micah is a ten-year-old boy who lives in Ojai, California with his mom, Chelsea, his dad, Don, and his older brother, Joe (13). Micah is like any other ten-year-old boy, he loves to goof off with his family, loves watching Pixar movies with his friends, and going to the zoo or the aquarium. His parents have made it their goal that Micah fully lives the life he’s been given each and every day.
Micah is diagnosed with Spinal Muscular Atrophy type 1 (SMA) – a genetic neuromuscular disease characterized by muscle atrophy and weakness. It is reported that most children with SMA type 1 will live only a few years, but let us proudly remind you, Micah is 10 years old.
We invite you to read more about their story and support Micah through a purchase from our shop where every purchase will help us purchase a Chill-Out Chair for Micah, which is a high-grade, comfortable chair perfect for his needs! You can also subscribe to our podcast and hear our interview with Micah’s parents releasing April 23rd.
“Micah has taught me that of all the things that we place the importance on in our lives – love is what outweighs all of it.”
When Micah was two months old Chelsea and Don noticed something wasn’t quite right with Micah’s lack of movements. According to his dad, Don, he was not quite as squirmy as he should have been. The doctor said he was not meeting the milestones he should be meeting and was referred to a neurologist. Once the neurologist looked at him he said he seemed fine and that he just had low muscle tone. Micah’s parents were assured that they would do physical therapy with him and that everything would be fine. Chelsea shares that in hindsight the physical therapist mentioned concern about the way Micah was breathing. She noticed an abnormal breathing pattern – a common symptom with children who have spinal muscular atrophy.
When Micah was close to six months old he was at home sitting in his mom’s lap when out of nowhere he had a traumatic breathing episode. Chelsea explains that he turned blue and was not breathing at all. She turned him over and immediately worked at getting his throat clear. After some success, Micah started screaming and crying, but was still not breathing well so they rushed him to the hospital. At the hospital an X-ray was done of Micah’s chest; one lung was completely collapsed and the other lung had a lot of fluid in it. At that point all the hospital could do was put Micah on oxygen and have him transferred to another hospital. Chelsea and Don were completely baffled and had absolutely no idea what was going on with their child.
It took a week for a diagnosis to come and confirm that Micah had Spinal Muscular Atrophy type 1 (SMA). SMA is a genetic neuromuscular disease characterized by muscle atrophy and weakness. According to the SMA Foundation, the disease generally manifests early in life and is the leading genetic cause of death in infants and toddlers. SMA is caused from a deficiency of a protein called SMN, “survival of motor neuron”.
SMA is a recessive genetic disorder that is contributed by both parents. Chelsea and Don had never heard of this before and never knew to even be on the lookout for it. Their firstborn son, Joe does not have SMA so this was never on their minds. If both parents are carriers there is a 25% chance of them having a child with SMA.
The neurologist was upfront and honest with Chelsea and Don on what to expect. Chelsea shares, “They told us we would be lucky if he made it to one and he would die by two.” But Micah did not die by two. He continued to outlive the grim prognosis that was put on him. At age five he had a tracheostomy to help with his breathing and it greatly improved his quality of life.
One thing to remember about SMA is that the mind is unaffected. Micah’s intellect is that of any other ten year old boy. In spite of the weakness in their bodies, children who have SMA are very bright, sociable, happy, sweet and silly children.
When researching SMA it is easy to assume the worst and to feel as if it’s a grim diagnosis with little hope, but a breakthrough medication that is still fairly new has been launched and is providing new hope for families with children who have SMA. The medication is called Spinraza and through clinical trials it has proven to show that it significantly slows the disease’s progression and is able to improve strength in individuals who have SMA. Micah is so far the oldest patient who is receiving the Spinraza treatments. Chelsea shares that she’s noticed a huge improvement in his breathing since the start of treatments; he’s able to move his head left to right with controlled movements. Before this he has never had head control.
Micah’s diagnosis caused a major life shift for those around him, especially his father. Don shares that before the diagnosis he was a very ambitious and driven individual. “I’ve always been very business-minded, focused on attaining wealth and things. It was important to me to have things and to be able to do things. At the moment that they told us not to expect more than two years with our son, mentally it all went away – and none of it mattered. It all of a sudden felt almost silly. It immediately took my mind off the things I was trying to accomplish with my life and made me focus on this life that we were given and put in charge of and blessed with being apart of. You know, I had to learn how to be a dad to Micah. My goals in life were completely rewritten.”
Chelsea adds, “Once Micah was diagnosed Don was a lot more present because the moments that we have were more important now. So, when he was home he was there. He was interacting with Micah, talking to him. Joseph too. Both the kids. It’s like every moment that he’s here now is more valuable. It really did, it shifted kind of where the important time was spent.”
Throughout Micah’s journey, his older brother Joe, has had to grow up in ways that helped shape him into a young man who is very sensitive, caring, and empathetic. Don shares two things he’s proud of in regards to Chelsea throughout this journey, “Her ability to translate love into action with the boys is incredible. Secondly, I would say her transformation into a mom-nurse.”
As Micah continued to outlive the life expectancy he was given, Micah’s parents were determined that he experience the world. Don shares, “He has not been, to any extent, kept in a bubble or sheltered from the world. He has been out to the desert dirt-bike riding. He has been to the lake water skiing. We did life with him. I think that a lot of people are afraid to put their handicapped kids out there to experience the world. I would encourage them not to do that to them.”
Chelsea adds, “Now it’s not he just has this little bit of life to live, now it’s we just want him to be fulfilled every day.”
Micah lives the fullest life. He is surrounded by a community of loyal friends and family who see him for who he truly is and not as a diagnosis. Micah is a happy kid who makes the world a beautiful place.
Throughout the month of April we will be shouting love for Micah and four other kiddos with their own special and unique stories. We hope you will join us in getting to know these four incredible families.