HOPE for Curing Liam Baines
Organized by: Will, Amy and Liam Baines
This story is being shared on behalf of our friends and their 5-month-old baby, Liam, who will be in need of quite a lot of help in the days to come.
Liam Baines was born on June 22nd to first-time parents, our friends Amy and Will. He was born beautiful and perfect, and every bit as wonderful as his family expected. His first couple of months at home with Mom and Dad were spent cuddling and getting to know one another, building their bond as a family of three. As many of you know, life is inexplicably sweet with a new baby in your arms. This time with Liam has been no different.
However, in September, Amy and Will started to notice a regression in Liam’s movements. He was kicking his legs less, and time on his stomach was increasingly difficult as he was having trouble with his neck strength. Amy, having been both an early-childhood teacher and nanny before Liam was born, took her concerns to their pediatrician who was not alarmed, accrediting Liam’s behavior to simply developing at a slower pace. But Amy’s motherly instincts pushed her to insist upon a referral to a physical therapist, knowing that it was something more.
After meeting with Liam, the physical therapist validated the family’s concerns, and he was referred to a neurologist for a deeper investigation. On November 5, Amy and Will received the results of a round of genetic testing, confirming the fears that they didn’t even know that they had. Liam was diagnosed with Spinal Muscular Atrophy (SMA), a severe genetic neurological disorder- a diagnosis that no parent could ever be ready for.
Spinal Muscular Atrophy will dramatically shorten Liam’s life.
SMA involves the loss of nerve cells in the spinal cord that control voluntary muscles, but there are varying levels of SMA, depending on the age the patient is when diagnosed. Diagnosed in a teen or adult, SMA is often Type 4. When diagnosed in children, Type 2 or Type 3. Those diagnosed as infants are Type 1. The earlier the age of onset, the greater the impact on motor function. Liam is 4 months old.
In writing this story, I just paused, staring at my monitor for nearly a half-hour, not knowing how to approach what to write from here. I believe in possibilities. I believe in faith. And I have hope in modern medicine. But there are facts behind this disease that are uncomfortable to say, and for people unfamiliar, to really understand, it’s important to share these common implications. When discussing them, I will use the word “often,” because Liam will write his own personal story.
SMA often impacts a baby’s ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit are no different from that of a healthy baby, but their body fails them. Babies with SMA Type 1 have, in the past, had a life expectancy of between one and two years and those years require around-the-clock medical assistance and monitoring.
But with time, comes medical advancements.
There is currently no treatment and no cure, but the National Institutes of Health has selected SMA as the disease closest to treatment of more than 600 neurological disorders! Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.
For now, Amy and Will are having Liam seen by a world renowned doctor who specializes in SMA right here in Madison, WI. This doctor’s practice recognizes the challenges and common prognosis that children diagnosed with SMA face, but chooses to focus on the possibilities for each individual child. Some babies diagnosed with SMA Type 1 have been found to well outlive the years they were “given,” go to school, experience the world, and have a quality of life that those caring for them never expected.
Will, Amy, and Liam spent the week of December 7 at the hospital learning and getting a feeding tube placed on baby Liam. Exhausted after a long week and trying to adjust to a new life style, they received good news that Liam was accepted into the SMA trial in Chicago. Almost as quickly as they received the news, the trial dosing began on December 14. In January, they are planning on surgery to replace his nasal feeding tube to a g-tube (stomach feeding). So they are praying and preparing for their upcoming journey and next steps.
Nothing is set in stone. And while Liam certainly has this disease working against him, he has so much on his side as well- a truly brilliant and caring team of professionals, medical technology, and parents and a family who will do whatever it takes to make his world beautiful for as long as fate allows. We all know that Liam’s life will be filled with love. With help, may it also be filled with time.
The costs associated with Liam’s care are bound to be great: physical therapy, the placement of his feeding tube, specialized strollers, respiratory equipment, his around-the-clock care. It’s difficult to predict his needs as of now, but we know that his family will need assistance from others in order to give Liam everything he needs.
To those of us who are parents and trying to wrap our heads around how, how we could possibly be strong enough to handle a diagnosis like this for one of our children: We would handle it with faith and with support of our family, our friends, and of strangers.
Every single person who reaches out to them with what they have to give, will not only support Liam’s needs, but they’ll also support his parents’ needs- the need to know that they are not alone, that every parent who had heard what they are going through as a family can imagine their grief at this diagnosis, can feel the agony of knowing what their child is about to battle, and is sending their most heartfelt wishes for a path that is filled with hope and with unexpected, beautiful surprises.
To Liam: You are in the most loving of hands. May that love carry you through any struggle that you may face. You will be in the minds and hearts of everyone who knows your story.
To Liam’s parents: You are never alone. We will be holding all of you up in hope and in prayer. Our hearts and minds will continue to be with you as you walk this journey with your sweet baby. Where we can help, please let us be there in any way that you need.
Love and Light,