Liam!Meet Liam. His mom is the very cool letterpress designer Lynn Russell from Satsuma Press. Liam's very cool too. He will be turning six years old on Friday and he drives a power chair called a Snap Dragon. He rolls to school with his friends and goes blueberry picking, and he cruised in the school jog-a-thon and even talked his mayor into making changes in his town.
In fact, because Liam has captured the hearts of many, an online community of artists is working together to raise funds for a bathroom renovation for Liam.
Today we talk to Lynn about Liam, his diagnosis, their everyday life, and the charm that makes him one of a kind.
Tell us about your son Liam, his diagnosis, and how old he was when you got the diagnosis.
Liam has a neuromuscular disorder called Spinal Muscular Atrophy (SMA) Type II. Before he was diagnosed, we had never heard of it. SMA ranges from Type I (the most severe) to Type IV (adult onset). Liam is a very strong Type II. There is a lot of variation even within each type, but Liam sat up by himself and crawled within his first year. It was shortly after his first birthday that we began to notice that he was losing physical abilities. He was diagnosed in early July 2005, when he was 14 months old.
How does Liam's diagnosis affect his daily life as an almost-6 year old boy?
Liam's standerWhat Liam's diagnosis means for our family in the day-to-day is that Liam does not walk, but uses an incredible power chair that we brought back from DragonMobility in England in March of 2006. He's a very good driver, though sometimes prone to errors of judgment, like any five-year-old -- or, for that matter, anyone of any age. While at school and at home, Liam also spends time in a stander, which he can propel by himself while wearing brace.
Because of SMA, a common cold can lead to a serious illness, so we do our best to prevent this by using respiratory equipment such as Cough Assist and BiPAP. In kindergarten, Liam is surrounded by a sea of germs, so we try to find a good balance of caution and practicality -- without becoming paranoid.
Like many other kids his age, Liam's learning to read and write, only he lacks the hand strength for extended amounts of writing, so we are figuring out how to address this -- as simply as using a soft leaded pencil all the way to getting him a classroom keyboard this year.
We also meet with our neurologist once a year, attend clinics at Shriners Hospital in Portland, take Liam to aquatic therapy once a week.
Spinal Muscular Atrophy is a purely physical disorder, so cognitively Liam is unaffected. I think it's important to say that there are many things that Liam CAN do, as well as many things that he cannot. I strongly believe that people are MORE than their diagnosis. Our wish has always been to provide Liam with as much independence as possible in as many ways as possible.
Liam goes for blueberriesLiam is a bright and curious little boy -- so like many others and, at the same time, so unlike them. Liam's Snap Dragon allows him to explore the world around him in a way that many other power chairs would not. His Snappie has an elevator that lets him, by himself, go down to floor level and back up again. He can get down on the floor and play. He can race around outdoors. He can go on a bumpy path to pick blueberries in the summer. He can join his peers at a little table. He makes friends with people of all ages easily and quickly.
However, there is not yet a cure for SMA -- and so he knows and we know, that it is likely he will never walk, climb a tree, ride a bike. He's been potty trained since just after he turned one, yet he's never been able to take himself to the toilet. He needs help lifting a heavy book, taking the stubborn cap off a marker, getting dressed -- but it's simply because he lacks the physical strength to do these things. There are many tasks and movements for which Liam needs physical assistance, but we are acutely aware that there is a delicate balance between helping him and simultaneously cultivating self-sufficiency, confidence and independence. He has an amazing chair, but with it comes a weight of responsibility that most six year olds don't experience.
Advocating for Liam is something we have learned to do -- better and better -- over the years, in so many environments, in so many ways. We are fortunate, though, because as Liam grows older, he will be able to advocate for himself.
My boy brings me great joy -- in his sense of humor, his charm, his engagement with the world and the people in it -- but his reality breaks my heart at times, too.
People don't always consider the expenses of raising a child with special needs. What kinds of things have you had to purchase throughout his almost six years?
The single biggest expense to date has been Liam's power chair at close to $25K. To our complete surprise, our insurance company denied coverage for power mobility of any sort, despite multiple letters from doctors and physical therapists outlining one as a medical necessity. We fought our insurance for, literally, years; in fact, if it were not for Liam's Trust, we may still be fighting the same battle -- and Liam would not be the engaged and engaging child he is today.
In addition to Liam's SnapDragon, there have been numerous expenses, some bigger, some smaller: monthly medication, aquatic therapy, dynamic stander (our insurance denied the first one, but did pay for the second one. It may be that I know the ins and outs of insurance so much better now!), ramping at various houses, van and lift for power chair, a sleep study last December, respiratory equipment, a five-day stay in the PICU when Liam was three... Our insurance does pay for some of those things -- medicine, aquatic therapy, stander, respiratory equipment, PICU -- but only after our deductible kicks in and often without any real rhyme or reason even after that.
The bathroom remodel is our most immediate need, although there are other items on the long term list, such as a therapy tub and a residential lift that will allow Liam access to our basement.
You're hoping to raise money to fund the bathroom remodel this summer to make the room fully accessible for Liam. How much money needs to be raised? What needs to be done to the bathroom.
Liam's bathroom at presentWe are hoping to raise $15K to put toward the bathroom remodel this summer. We are fortunate that our existing bathroom can be remodeled to be fully accessible. We'll need to rearrange everything but the toilet, but the footprint of the bathroom can stay the same.
We'll take out the bathtub, sink and cabinets and reconfigure the way the bathroom is set up. A walk-in/roll-in shower with sloped drain and built in bench seat will mean easier and safer bathing for Liam. Although he'll always need assistance in this, it's been well over a year since I've been able to do this comfortably. At almost 6, he weighs 35 pounds, which is not actually all that big for his age, but since he lacks the muscles to hang on, he feels quite heavy. In addition to the new shower, we'll install a wall-mounted sink -- one that Liam can drive right up to. This means that he can wash his hands all by himself -- which he is fully capable of doing with the right accessibility. These kinds of things are easy to take granted, until you can't.
Tell us a good Liam story.
LiamThis past fall, Liam started full-day kindergarten at our neighborhood public school. It has been a very positive experience -- excellent teacher, great kids. On days when it's not raining, we roll/stroll to school with Liam. This takes about 15 minutes, but we go along the busiest street because it is the one hat has curb cuts.
One day we saw our mayor at the public library where he is each Saturday. Liam had met him twice before -- over the summer downtown and at his school.We urged Liam to go over to talk to Mayor Tomlinson.
Liam told him that he didn't like how he couldn't go to school on the same side street as the other kids, because there aren't enough curb cuts -- or, in some instances, there will be an intersection with just one, which does no good at all. The Mayor got out his Corvallis map and they looked at it together.
The next Monday, we received a call from the school secretary. She'd gotten a call from the Mayor, who couldn't remember Liam's last name, but knew he went to Jefferson and was in kindergarten. He wanted to let us know that he'd arranged for curb cuts to be put in along that street by the time Liam starts first grade.
This is the benefit of living in a small town; this is the power of one voice -- even a five year old's -- speaking out and asking for change. I know this doesn't happen all the time -- the speaking out, the single voice, or the change -- but it can. And I don't think it hurts that Liam has a certain charm.
How can readers donate to the fund-raiser and help remodel Liam's bathroom?
First, let me say that we have been completely overwhelmed by the generosity and kindness that has come our way in just the few days since I launched Liam's blog and fundraiser.
Interested people can donate to Liam by going to the We Love Liam blog. There is a donation button that links directly to a PayPal account. Each and every donation, small or big, helps. People can also keep the momentum and interest going by posting about Liam on their blogs, FaceBook and Twitter.
Over on We Love Liam, I'll also be starting an online raffle on Friday (I hope), which is Liam's 6th birthday. There are some pretty great prizes from a long list of artists I really admire, including:
- abby try again
- Angela Liguori
- Ashley Goldberg
- Elisabeth Bentz
- Elizabeth Soule
- Heart of Light
- Herriott Grace
- Lara Cameron
- Lisa Solomon
- Local Library Jewelry
- Paige Russell
- Pigeon Toe Ceramics
- Pistachio Press
- Postal Press
- Shim + Sons
- Skinny laMinx
- Stone + Honey Jewelry
- Sycamore Street Press
- Uniform Natural
- Yu-i Chan
- And, of course, Satsuma Press and maybe a few others.
Good luck, Lynn, and happy birthday to you, Liam. Six is awesome!