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Tuesday, May 3, 2016

Zion's fight: SMA diagnosis devastates Hoskins family

Wednesday, August 18, 2010

Zion Hoskins, the son of Paul and Chelsea Hoskins of Greencastle, was diagnosed in May with type II spinal muscular atrophy. Zion has already lost the use of his legs. Banner Graphic/JAMIE BARRAND
GREENCASTLE -- Watching their children take their first steps is a moment parents wait for from the minute their babies are born.

Sadly, that is one milestone Chelsea and Paul Hoskins of Greencastle will likely never experience with their 21-month-old son Zion.

In May, Zion was diagnosed with spinal muscular atrophy. Doctors have told Paul and Chelsea their son will never stand on his own or walk.

SMA types I, II and III are part of a group of hereditary diseases that are marked by extreme weakness and wasting away of the voluntary muscles of the arms and legs in infants and children.

A blood test can detect SMA, but it is not one of the routine tests performed either prenatally or after a baby's birth.

Zion Ellis Hoskins was born on Nov. 9, 2008. A happy, social child with bright blue eyes, an infectious smile and a love for Pepperidge Farm Goldfish Crackers, he has compensated for not being able to use his legs by propelling himself with his arms and upper body.

Zion's parents were unaware anything was wrong with their son's health until he was 11 months old. Until that point, they said, Zion had been progressing normally -- he had been able to stand with support and was crawling.

Zion Hoskins, 21 months, takes a break from riding his rocking horse to give his father Paul a kiss. Banner Graphic/JAMIE BARRAND
"All of a sudden it was like he was regressing," Paul said. "He couldn't stand anymore and his crawl had changed ... it was more labored. We didn't know what to think ... we didn't know if he was just falling behind, if he was going to be a late bloomer or if there was something really wrong."

In December, they took their son to his pediatrician, who referred them to First Steps, a state-funded, early intervention program for toddlers and children with special needs.

"The pediatrician acted like there was nothing wrong," Chelsea said. "Even though we told him everything that had been going on with Zion, it was just a regular check-up. He didn't watch him crawl or anything."

Zion, who was still losing muscle tone in his legs but developing significant upper body strength, began having sessions with a physical therapist from First Steps.

The physical therapist suggested Paul and Chelsea take Zion to a developmental pediatrician. They tried, only to find the waiting list to get in was months long.

Banner Graphic/JAMIE BARRAND
"The therapist said while we were waiting, we should take him to see a neurologist," Paul said.

The neurologist did a battery of blood tests on Zion, all of which came back normal. An MRI, however, revealed suspicious findings. Zion was admitted to Clarian North, where he had several more tests, including a spinal tap and electromyography (EMG -- a technique for evaluating and recording the electrical activity produced by skeletal muscles).

Doctors at Clarian North diagnosed Zion with chronic inflammatory demyelinating polyneuropathy (CIPD) -- a neurological disorder marked by progressive weakening and impaired sensory function of the legs and arms.

For several months, Zion was treated for CIPD. He continued with his physical therapy and received IVIG (intravenous immunoglobulin) therapy.

Then it came to light that when the first medical tests were run on Zion in December, the blood test for SMA had "been lost," Paul said.

Zion was retested for SMA, and the test came back positive.

For four months, he had been treated for a condition he didn't even have.

"Up to that point, when thought Zion had CIPD, there was still a chance he was going to improve," Paul said. "There was still a chance he would walk someday. Once we knew it was SMA, that was all gone."

According to information at the National Institute of Neurological Disorders and Stroke website, SMA occurs because of an abnormal or missing gene, the survival motor neuron gene (SMN1). This gene produces a protein essential to motor neurons. Without it, lower motor neurons in the spinal cord degenerate and die.

The three types of SMA are determined by the age of onset and severity of symptoms. Zion has type II , which usually shows itself when the child is between 6 and 18 months old. The symptoms are less severe than type I, which is usually evident at the child's birth.

Type III can happen as late as adolescence and may only cause moderate disabilities.

Although the typical life expectancy for a person with type II SMA is late teens or early adulthood, there is really no way to know how quickly the disease will progress.

"It's really just a waiting game," Paul said quietly, watching his son happily root through a pile of toys and stuffed animals. "As he loses more and more muscle mass, it will affect his ability to swallow, and eventually his ability to breathe."

Now, even though Zion doesn't use his legs, he has braces on them. The reality, Paul said, is that Zion is destined to end up with a feeding tube and on a breathing machine. He will use a wheelchair.

The Hoskinses are still paying medical bills from Zion's treatments, doctor's visits and hospital stays. As of now, he is not on any medications and only has to go for a check-up every three months.

"The hardest thing," Chelsea said, tears welling in her eyes, "is knowing that, at 21 months, there are already so many things he wants to do but can't."

Chelsea took a deep breath and smiled.

"But his resourcefulness is amazing," she said. "He'll grab his own leg and use his foot to kick a ball with it. He's learned to get down off the couch by himself."

Chelsea, 21, is the daughter of Garret and Kelly Nichols, who are missionaries and live in Ghana, West Africa. Chelsea was homeschooled and lived in many different places, but considers Greencastle the place where she grew up.

Paul is the son of Sharon and Curt Hoskins of Greencastle. He graduated from Greencastle High School in 2005. His mother works for Tzouanakis Intermediate School, while his father works for Duke Energy.

Chelsea is pregnant with a daughter, and is due in October. She was working at Hendricks Regional Health as a certified nurse's assistant when Zion was born, and has been a stay-at -home mom since.

The chance the new baby will have SMA is small, but Chelsea admitted the fear that it could happen creeps up on her once in a while.

"It scares me a little," she said. "But I try not to sit and dwell on things."

Chelsea said the therapists and geneticists have all told her she needs to sit back and let Zion do things for himself, and that has been hard for her.

"He'll try to do things that should take a second and they take him forever," she said. "I just want to do it for him. It's hard to watch him struggle. He'll fall over, but he gets back up and keeps trying."

Paul, 23, works as a corrections officer at the Putnamville Correctional Facility. Despite the hardships the disease has caused the Hoskins family and Zion's grim prognosis, Paul remains thankful for his son.

"I actually feel like I'm blessed," he said, smiling softly. "Just in the time I've had with Zion already, he's changed my life. Having him ... it's made me look at everything in a different way."

Chelsea said her fondest wish is that her son will be able to have as normal a life as possible despite his physical limitations.

"We hope he'll be able to have as many opportunities as other kids," she said.

Paul agreed.

"We really want to send him to public school when the time comes, but kids can be mean," he said. "So we don't really know yet what will happen there."

The Hoskinses are encouraged by the fact that Zion is already doing things doctors said he could never do. For instance, he can stand with support, just not for long periods of time.

"It'll be interesting to see how things progress," Paul said. "I like to think Zion is going to prove all the doctors wrong."

Fundraisers planned

Although Zion will probably never stand or walk on his own, there is a piece of medical equipment that could be beneficial for him.

Paul and Chelsea have looked into purchasing a stationary stander for their son -- an apparatus Zion would be placed in that would allow him to stand upright for an hour or two each day. Standing helps with digestion, elimination, respiration and circulation.

The stander Paul and Chelsea looked at was $1,200 -- and insurance will not cover it.

The Hoskinses will also need to purchase a wheelchair for their son that will cost about $20,000. Paul and Chelsea expect to end up paying about $12,000 out of pocket for that.

To help raise money for these items, "Fight for Zion" T-shirts and wristbands are available. Shirts are $15 each, and wristbands are $3. Additionally, two fundraisers are planned for Saturday.

The first is a 5K walk-run at Big Walnut Sports Park. Cost is $20 per person and includes a T-shirt. Registration begins at 8:30 a.m., and the event begins at 9 a.m.

That evening from 4 to 8 p.m., an all-you-can-eat spaghetti supper will be held at the Fillmore United Methodist Church. Cost is $10 per person, but those who have already purchased "Fight for Zion" T-shirts will only pay $5 if they wear them.

The fundraisers are being handled by Paul's sister and brother-in-law, Melissa and Kyle Ames. For more information on the fundraisers, call 720-0627.

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I will be praying for Zion & his parents, while they are going through this ordeal. I believe God has a miracle in store for this family!

PS where can you buy shirts to help out??

-- Posted by amkedu on Wed, Aug 18, 2010, at 8:00 AM
Response by Banner Graphic:
Call Melissa Ames at 720-0627. Zion is an amazing boy, and I am sure the family appreciates your prayers!

I know this Family and if you are blessed enough to know Zion, he melt's your heart. He has the best smile with big blue eyes!!! Paul and Chelsea need alot of support today and forever!!! Fight for Zion!!!

-- Posted by parentof ghssenior on Wed, Aug 18, 2010, at 9:12 AM

Feel free to contact me, Melissa Ames, to order tshirts. They are $15. 765-720-0627. We love you Zion, Paul, and Chelsea.

-- Posted by mames on Wed, Aug 18, 2010, at 10:54 AM


-- Posted by MORTY3 on Wed, Aug 18, 2010, at 11:40 AM

There will be a silent auction and games at the all-you-can-eat spaghetti dinner saturday night. Great stuff to bid on and compete for like Colts tickets, homemade rocking chairs, restaurant gift certificates, authentic west african paintings, and alot more. Come join the Fight For Zion! Thanks.

-- Posted by airames11 on Wed, Aug 18, 2010, at 3:08 PM

I've known Paul and his family for a very long time - we grew up together in the same church. I love this family very much, and it breaks my heart to know that they're going through such a trying time in their lives. I want Paul and Chelsea to know that I am praying for God's will in their lives and Zion's life - he is such a sweet little boy, and God has such a wonderful purpose for his life! We serve a wonderful Savior, and everything He does is for our good. What a wonderful thought to know that God is in control!

I pray that God blesses this Saturday's events - wish I could be there! Much love to you both and Zion!

Because of Christ,

Meredith (Miller) Luckhaupt

-- Posted by m.a.luckhaupt on Wed, Aug 18, 2010, at 11:15 PM

Why don't everyone pitch in and let them have a yard sale to benefit the family all proceeds go to them I have many items to go in there..

-- Posted by Friend2many on Wed, Oct 6, 2010, at 1:44 PM

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