By Kate and Evan Eilers
Courtesy Article
Our 8-year-old daughter Lucia (Lucy) is one of the brightest spots of sparkling joy in this world. We are so grateful to be able to call her our daughter. So grateful that we get to be a part of her world. For Lucy, however, the world is a place that has some extra challenges. Two years ago, we were told why. Lucy has an ultra-rare genetic mitochondrial disease called WARS 2 Associated Disorder (less than 100 known cases in the world). It is progressive and life-limiting and has no treatment and no cure. There is a range on how fast the disease progresses, but it will eventually leave her in a wheelchair and with a shortened life. It is also taking her vision. A year and a half ago an ophthalmologist discovered optic nerve atrophy. This isn't correctable or reversible, so she now wears magnifying bifocal glasses to make print bigger and easier to see for as long as possible.
Lucy also has fine and gross motor delays, intention tremors and cognitive processing delays. This all means that everything she does is harder for her than other kids her age, making it difficult for her to keep up in the classroom and on the playground. Tripping is a normal part of life. Lucy regularly goes to physical, occupational and speech therapy. Because we live in a small town, this means a drive over an hour away in each direction. The same is true for each of her specialists: cardiology, neurology, ophthalmology, audiology, neuropsychiatry, physical medicine and biochemical genetics (Lucy's mitochondrial specialist). Never does Lucy complain about the frequent long drives to and from these appointments or the hard work she puts in PT, OT and speech therapy.
One thing that has stood out is how well Lucy responds to the therapy dog at one of her specialists' offices. When she finds out that she gets to see Renly that day, Lucy lights right up. She is more engaged during the appointment and excited to see her four-legged friend. This stood out so much that her doctor recommended that we look into applying for a service dog for Lucy. I was hesitant at first. But then I started reading the testimonials of parents with special needs kids who have challenges similar to Lucy, and it was like a lightbulb lit up. I could have been reading about my own child.
Lucy has a number of specific challenges that her doctors, and we, believe will help to open up her world and improve her quality of life. One particular challenge is her verbal delays. Lucy is easily overwhelmed by things that feel big or loud, and particularly anything that makes her feel off balance. Even a trip to the dentist can be a challenge with the reclining chairs. Changes in routine, like her older sister not being at school, can also lead to these panicked meltdowns. When Lucy is scared, her words entirely abandon her. Because of her cognitive processing delays, it is difficult to break through her panic, and she is not able to tell us exactly what is upsetting her. This can lead to long meltdowns, sometimes upwards of an hour, where she is terrified and we are helpless to calm her. A service dog can sense and gently interrupt these stretches and even signal us as they are developing so that we can also try to intervene early.
Lucy gets more pokes at the hospital than most kids her age. Due to the nature of her disease, her body is always in an energy deficit. This means that anything that puts a strain on her - even fairly mild illnesses - can worsen her condition rapidly and over time. Because of this, if we can't get good nutrition in her when she's sick (a challenge even on healthy days), we have to take her to the children's hospital for IV dextrose fluids and labs. She has also had several brain MRIs that require full sedation and more pokes. A therapy dog will be able to help her through the panic and lessen the trauma of needles by calming her through the process.
On top of the calming, a service dog will be of physical help to Lucy. Right now her disease physically looks like a child with early Parkinson's. When the season's change - winter with slippery ground and boots, and summer with sandals or people walking faster - Lucy feels off balance and often grabs our wrists and waistbands to help her feel more on balance with her walking. Her service dog will be fitted with a special harness that Lucy can hold on to for better stability. As the disease progresses, it will also be able to retrieve dropped objects for her.
Aside from the physical and emotional benefits directly from having a service dog with her at all times, we were struck by parents talking about how service dogs have opened up their children's worlds socially. Where other children might not normally interact, we have read time and again where others now come up to their kids because of the service dog. Because of her delays, finding friends can be difficult. Lucy was once told by another little girl that she was too slow to play with her and her friends. We are grateful that more kindness is usually shown and Lucy has a good buddy this year, but a service dog provides a constant companion.
At the beginning of our journey, knowing what Lucy is facing, we decided that if Lucy's life won't be as long as it should be, then we will make it as full and joy-filled as possible. There are some things we can't change. We can't freeze a progressive disease or fix all of her challenges, but we will never stop fighting to bring her all of the joy we can and ease her burdens wherever possible. Unfortunately, this isn't something we are able to do on our own. We are so grateful to all who are willing to help Lucy on this journey and help to bring her the joy and sunshine that she gives us every day.
With all that said, we are currently running a shoe drive fundraiser to cover the costs related to getting a service dog for Lucy. From her doctor's recommendation, we have chosen 4 Paws for Ability, as they work with children Lucy's age.
After some research, we applied and after medical recommendation forms from two of her doctors and a video interview, Lucy was approved. Thanks to the generosity of many people, we were able to raise the required amount for the dog itself in a very short amount of time and are now officially waiting for Lucy's placement date (typically about a year and a half, according to 4 Paws for Ability). Getting the service dog for Lucy will involve travel to Xenia, Ohio where 4 Paws is located and taking part in a 10-day training course. Travel and lodging for this is a large part of what we are working to raise funds for.
One fundraising idea that 4 Paws gives is connecting their families with a nonprofit organization called Funds2Orgs. They work with organizations and individuals to gather and group gently used (no holes/rips/worn soles, but stains are okay) shoes, boots, flip-flops (basically any footwear other than slippers). They will pay us by the pound for the amount of shoes we collect, with a goal of 2.5 tons (about 100 bags of 25 pairs each) of shoes. They then send these on to small businesses in developing nations who will sell the shoes for their own livelihoods.
Our shoe drive runs through the end of November. We currently have collection boxes at Hansen Foods in Hart, Weesies Brother's Garden and Landscape Center (in Montague and Nunica, although these are only there through the end of this month as those are their closing dates for the season), our church (New Era Christian Reformed Church), and our children's school. I am working to find some more locations for drop-off boxes. We are also happy to travel to pick shoes up from people individually.
For more information, or to donate, please contact us at eilerskm@gmail.com or 231-329-1106.
