Getting a new leash on lifeWhen Woodbury residents Kristen and Dan Spielman’s son Nathan was born in 2008, doctors told them something wasn’t right.
By: Amber Kispert-Smith, Woodbury Bulletin
When Woodbury residents Kristen and Dan Spielman’s son Nathan was born in 2008, doctors told them something wasn’t right.
“We didn’t know there was anything wrong until the day Nathan was born,” Kristen said.
Nathan was born with a high palate, droopy eyelids and adducted thumbs. However, most significant, Nathan had low muscle tone. Doctors told the Spielmans that these were all indicators that Nathan had some sort of genetic disorder, but one that they couldn’t easily identify.
“He was just like a floppy rag doll,” Kristen said.
Kristen and Nathan said finding out that Nathan would unlikely have a “normal life” was quite a surprise to them.
“We were kind of grieving the loss of the vision of a normal child,” Kristen said. “With the support of our friends, family and our faith we just took it one step at a time and focused on the here and now.”
For the past three years, Nathan saw a parade of specialists from neurologists to orthopedists, to geneticists, but no one was able to identify where Nathan’s symptoms were coming from.
Additionally, Nathan was in and out of speech, occupational and physical therapies.
But in August of this past year, just before Nathan’s birthday, the Spielmans heard an answer to their prayers – the doctors had found a diagnosis.
“We felt kind of blessed since we finally had a diagnosis, which means we can know what to expect and know how to treat,” Kristen said.
Nathan was diagnosed with multiminicore disease, a rare genetic muscle condition where his muscle cells will always only perform at a small percentage of normal function.
“I like to explain it as the engine of his muscle cell runs, but it runs on tainted gas,” Kristen said. “It’s not super-efficient, it’s not super-strong and it’s not super-fast.”
Multiminicore disease falls under the umbrella of muscular dystrophy, Kristen said.
Some of the major symptoms of multiminicore disease include low muscle tone, low reflex time, droopy eyes, difficulty chewing, swallowing and talking and difficulty moving, which causes Nathan to wear braces on his legs.
“You have muscles everywhere,” Kristen said. “It’s extremely labor intensive for him to do anything – it’s the equivalent of climbing a mountain or something.”
Since Nathan is not capable of doing much for himself; the job has fallen onto Kristen and Dan to help Nathan sit down, stand up, get dressed and open a door among many other tasks.
However, the Spielmans are hoping to get Nathan a new caregiver – a mobility dog.
Shortly after Nathan’s diagnosis, Kristen and Dan began researching mobility dogs at the suggestion of Dan’s mother.
A mobility dog is a highly-trained service dog, wearing a special harness, that will help Nathan with such tasks as keeping his balance, retrieving items, opening doors, turning lights on and off, finding items, carrying items, pushing buttons, and helping with dressing and undressing.
“Aside from just the amazing things the dog will do for Nathan mobility-wise, I’m super excited for him to have a companion,” she said. “He cannot keep up with kids his own age so he gets left in the dust a lot of the time.
“So, for him to have a constant companion will boost his self-esteem and allow him to see the value in himself.”
Nathan’s mobility dog will accompany him wherever he goes, whether that would be to school, to church, to the library or even on an airplane.
After researching mobility dogs, Kristen and Dan found only one agency that would provide a dog to a child as young as Nathan – 4 Paws For Ability, based out of Ohio.
The organization will specifically select and train a dog for Nathan based on his needs, his personality and the family environment.
However, the cost of a mobility dog is roughly $25,000 and the Spielmans would be responsible for paying for $13,000 of the training costs.
The mobility dog training lasts roughly 11 months, after which time the Spielmans will travel to Ohio to be “trained” in how to utilize their dog’s abilities.
Kristen said they will most likely be assigned a golden retriever, a labrador retriever or a mix breed of the two.
A mobility dog works for roughly seven years before it is “retired.”
Since the cost of the mobility dog is so high, the Spielmans have turned to the community for support in purchasing the dog for Nathan through a wide variety of fundraisers.
In addition to having a website on the GiveMN website for donations, the Spielmans have also received donations from several businesses in the area that have donated entire profits to Nathan.
Additionally the Woodbury Lutheran Church Moms of Preschoolers group donated all of its proceeds from its Christmas boutique to the Spielmans.
So far the Spielmans have roughly $8,000, of the needed $13,000 raised.
The Spielmans will be holding another fundraiser Dec. 14 at Woodwinds Health Campus, where Dan is a nurse practitioner.
A silent auction will be held at the hospital all day where participants can bid on a variety of themed gift baskets and other auction items.
Some of the items up for bid include: gift cards, music by children’s group Go Fish, original artwork by local artist Susan Holloway and various photography packages.
“Whatever people want to give, whether money or time or prayer, is fine with me,” Dan said.
The auction was started after Dan’s coworker, and friend, Sarah Ball approached the hospital about holding some sort of fundraiser to help the Spielmans.
“Nathan’s personality is just so sweet,” she said. “I have seen how life is just a struggle for him, so I was on board to do whatever I could.”
Kristen and Dan said they are very hopeful Nathan’s mobility dog will help him be able to have an independent life as he grows up.
“He’ll never be a track star, but I fully expect him to live independently,” Kristen said. “I have all the same dreams that every mother has – he’s a really sweet little guy.”
Kristen and Dan said the entire family, including their other two sons Caleb and Luke, are anxiously awaiting the dog’s arrival.
“Even though we haven’t even met the dog or seen dog, I feel like we’re getting another family member,” Kristen said.
A silent auction to raise money for Nathan Spielman’s mobility dog will be Dec. 14 from 9 a.m. to 6:30 p.m. at Woodwinds Health Campus. For more information on Nathan Spielman, or to donate, visit http://givemn.razoo.com/story/Nathansnewleashonlife.