From the Heart of a Parent: Luke’s Story

From the Heart of a Parent: Luke’s Story

Luke Michael Knapp was born February 21, 2011. We already had a beautiful daughter and were thrilled to have a baby boy. Luke’s birth and first few months of life were all very normal. But after those first few months, we began to notice how inactive he was compared to other infants his age and that he didn’t seem very interested in attempting typical infant milestones, like rolling over. We didn’t think much of it since he seemed so healthy and normal otherwise. But at 6 months, when he still hadn’t rolled over and didn’t seem even close to being able to sit, we started feeling really concerned. We just kind of knew something difficult was ahead.

We saw the neurologist and had some genetic blood tests ran and Luke was diagnosed with Spinal Muscular Atrophy. Spinal Muscular Atrophy, or SMA, is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein—called survival motor neuron protein or SMN protein—that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness. SMA has the potential to be passed on to the child when the mother and father are carriers of the SMA gene. Half of children born with SMA pass away before they are 2 years old. We were told to take him home and enjoy our time with him.

It was like we were in a different world all of a sudden.  We had never before experienced such a feeling of helplessness. There was no treatment or medicine to fight it with. His condition would cause him to slowly weaken and have extensive medical needs. We were heartbroken and overwhelmed but determined to make the best of things. Fortunately we found out that there was an organization called Families of SMA. We went to the yearly conference a few months after his diagnosis to get more information on how to best care for him, as well as to meet other families experiencing the same challenges.

When we got there and saw so many of the kids driving their chairs around, we experienced a mix of emotions. On one hand, here were so many children burdened with the challenges SMA brings. On the other hand, they were so bright and happy! It was incredibly emotional and still is today to see Luke have to go through stuff that kids shouldn’t have too. But we had been so worried that Luke couldn’t be happy without the abilities we had always taken for granted and were so encouraged to see the kids thriving through such difficult circumstances.

It took a while for us to accept that we were now part of this whole other world. And even though we didn’t want to be there at all, we finally felt some hope and that we weren’t alone anymore. We also saw that lots of kids with SMA live longer lives than what we first thought. In the beginning we couldn’t imagine that life with a feeding tube and tracheostomy could be a good quality of life for anyone and dreaded the thought of making those decisions when they came. But over time we have had to make these decisions.

First it was the feeding tube when he was 18 months old, then it was putting him on a BiPAP machine at night to help him breath. Last February he got a virus that led to him getting the tracheostomy, and April of this year he had metal rods surgically inserted in his back to slow his scoliosis. There have also been multiple pneumonias and a couple broken bones in the past few years, but through it all Luke has been such a fighter. He’s incredibly resilient and loves life. When he first starting driving his power chair, we never imagined he would become as independent as he has.

A huge part of that independence has come from his experience at The Little Lighthouse. We put him on the waiting list when he was 8 months old. At that time we didn’t even know if he would still be with us when he made it to the top of the list. So each day at the LLH is such a gift. And as a stay at home mom immersed in the responsibility of being a full time caregiver, it gives me the much needed chance to have a little break. We love that he gets to see other kids in chairs so he doesn’t feel like he’s the only one. We love that everything is made possible there for him to participate in.

His confidence and social skills have grown so much these past two years. And most of all, we love that everything is centered around Jesus. We have no idea how we would have made it through all this without Jesus in our lives. Luke knows, without a doubt that God loves him.

When Luke was diagnosed we couldn’t understand how this disease could bring any good. But suffering has brought out a deeper joy and gratefulness than we knew before. Luke’s courageous spirit is such an inspiration to so many and a testimony to God’s strength through weakness. We chose this scripture for him when he started at the LLH:

My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians12:9

We are so thankful for the LLH and how it has blessed Luke and our whole family. We are excited to see how much more he grows this coming year!

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