Girl, 2, accepted for stem cell procedure

At the end of a whirlwind 24 hours after Avaia Di Marco was born, her parents, John and Ashely, learned how the rest of her life may be spent.
Diagnosed with spastic quadriplegic cystic fibrosis, Avaia, who just turned two this week, is not able to do very much on her own.
The disease affects all four of her limbs and causes involuntary movement and prevents her from, not only walking, but sitting up on her own. Her vision is also severely impaired, and she is limited to being able to detect light and colours.
And just this spring, Avaia stopped eating and now must receive food through a feeding tube.
“It’s been a struggle,” said Ashley.
Like many parents with severely disabled children, Ashley has become something of an expert on her daughter’s condition. Through information provided by doctors and contacts she’s met on internet chat rooms, she’s learned of an experimental treatment being offered in Germany.
The more she’s looked into it, researching its potential, as well as its risks, Ashely became convinced it was something she needed to try.
The treatment uses stem cells and would involve using a needle to extract them from Avaia’s hip. From there, the cells — which have the ability to grow into any other type of cell in the body — are turned into neurons and injected into spine through where they travel up into the brain.
Ashley said she’s heard stories of near miraculous recovery following the treatment, with some patients regaining full movement.
She said there’s “tonnes of stories of all these people who have gone, and it’s helped them.”
And while everyone has such dramatic improvement, anything that helps at all would be worth a try, she said.
The treatment is being researched in Canada, but Di Marco said there’s is no opportunity yet for patient trials.
But the treatment does not come without a cost. To send the family over and pay for the treatment, as well as the post-procedure medication, they will need to pay $30,000.
“It’s worth every penny to try,” she said. “The quality of life that she’s been given — it’s definitely not fair.”
To help the Di Marco’s out, Ashley’s mother, Lynn, who works at the Avondale at Carlton and York streets, is organizing a series of fundraisers with her other daughter, Brittany and co-worker Dawn Bomers.
The first is a yard sale and barbecue at John’s parents’ place in Thorold. The sale takes place July 31 starting at 9 a.m. at 87 Collier Rd.
On Aug. 7, there will be a bowlathon at Parkway Lanes, at 327 Ontario St. The events rolls out at 5 p.m.
On Aug. 9 between 5-7 p.m., the McDonalds at 85 Ontario St. will be donating 30 per cent of their profits of meals sold to those with a special Avaia’s Journey ticket.
And on Aug. 28, just a couple weeks before the family sets out for Germany, there will be a casino night held at Canadian Corp located at 7 Clairmont St. in Thorold.

A rare eye disorder leaves a small child nearly blind, but parents say there may be hope.

BELLE – Young 14-month-old Kailey Hughes was diagnosed with the Septo Optic Dysplasia at the age of five months. It left her almost completely blind.

“She’s a perfect little baby and we just want her to be able to be confident and hold her head up and just smile because she’s beautiful,” said her mother Jody Johnson.

When doctors told Kailey’s parents that there was no hope for her to see they started looking elsewhere. Their prayers may have been heard, on the other side of the world.

Parents said she has been approved for stem cell treatments in China. But the costs are steep. “It will be $30,000 for surgery and $6,000 dollars to reserve a date and time,” said her father Dewey Hughes.

Family members are counting on the generosity of others to help a fundraising miracle to come true. Through a series of hot dog sales and other events the family has raised thousands, but is still very far away from their goal of $40,000 dollars. “We just want her to be able to see,” said Johnson.

TO HELP THE FAMILY WITH DONATIONS:

BB&T BANK
5701 MaCorckle Ave.
Charleston, WV

Benefit Gospel Sing for Baby Kailey
Cedar Grove Baseball Field
July 17th, 2010
3 p.m.

For more information you can contact Dewey Huges at RhsDew62@yahoo.com

BOULDER CREEK — In an attempt to help their quadriplegic son, Jerry, become mobile again, the MacCallister family has sent 600 letters to the community to raise money for a trip to China for stem cell therapy.

Since the end of April, the Boulder Creek family has raised $2,000 toward its $40,000 goal. The total cost includes travel, the stem cell therapy and a month stay in China.

Jerry MacCallister, 20, was left paralyzed from the neck down after a motorcycle accident in January 2009. Before the crash, he had a 4.1 GPA, was a few lessons shy of getting his private pilot’s license and had completed his first semester of college at Embry-Riddle Aeronautical University.

Over the past 14 months, he has undergone intensive physical therapy. As a result, he has regained some mobility in his arms and can move his wheelchair with his hand. But the loss of being able to perform average, day-to-day activities has been overwhelming.

“He’s been struggling with coming to terms with his injury,” said Katie MacCallister, Jerry’s mom. “The first year was all about focusing on trying to recover as much mobility as possible. After reaching the one-year mark, he’s thinking, crap this might be it.’ He’s taking it kind of hard but we’re trying to keep it positive.”

The family has held multiple fundraisers in the past year to help pay for physical therapy that their insurance doesn’t cover. Spaghetti feeds, concerts featuring local bands and San Jose Giants baseball games have been successful options for the family.

Katie MacCallister began researching stem cell options and came across a company in China that performs the stem cell therapy in 25 hospitals throughout the country. She applied and Jerry was approved four months ago to be evaluated at one of the locations. If his condition is deemed operable, they could begin the four-week-long procedure.

“I asked for patient info and I contact people who had gone through the procedure who have had some success,” MacCallister said. “One gentleman was actually able to walk with the help of leg braces and a walker. We’re going into it with an open mind.

“We’re not expecting to walk out of there, but if he does regain movement in his legs that would be awesome. My hope is he at least regains enough function with his hands so he would be able to feed himself. At the very least he would have had four weeks of very intensive therapy.”

Jerry already goes twice a week to Spinal Cord Injury Functional Integrated Therapy in Pleasanton. In a full-body harness, he works on walking, balance and muscle performance.

“Jerry’s fight is not over; we will always keep hope alive that he will walk again,” Katie MacCallister said.

How to help

To donate to the Jerry MacCallister Assistance Fund, send checks to 162 McPheeters Circle, Boulder Creek, CA, 95006 or make a donation via PayPal at
http://followingjerry.blogspot.com.

Brian Lang wants to walk again.

Lang lost the use of his legs to multiple sclerosis a few years ago, and is hoping stem cell treatment will help him to his feet again.

The Hazle Township man has been researching the procedure and said it has shown “fantastic success” for others with multiple sclerosis. The treatment uses stem cells to replace or repair a patient’s damaged cells or tissues.

“It basically turns back the body to what it was like when you were born,” he said. The problem is the procedure is not offered in the United States, and it’s not covered by insurance, putting it out of reach for Lang. He wants to somehow raise money for the operation – and is hoping some will hear his story and want to help.

Lang has been in a wheelchair since 2005, a few years after his multiple sclerosis was diagnosed. He also tested positive for Lyme disease, which is spread through deer tick bites.

Until that time, he was active. Growing up on a farm outside Shickshinny, he has always loved the outdoors and the activities it has to offer. When he wasn’t working, he hunted, went snow-tubing and hiked.

He now relies on health aids to help him with everyday tasks like getting out of bed. And while his motorized wheelchair gets him around, it doesn’t compare to the freedom of being able to walk unassisted.

“It was tough,” he said of losing his independence and mobility.

Lang goes to physical therapy several times each week, and is able to stand with some assistance.

“My doctor told me, ‘With your determination, you probably will walk again,’” Lang said.

Lang knows he will, too.

“I know it’s possible,” he said. “I won’t stop trying until I walk again. When there’s a will, there’s a way.”

Lang said he’s willing to travel to Europe or China for the procedure, because it could be years until stem cell treatment is approved in the United States.

According to Dr. David Owens and Dr. Naomi Kleitman, program directors at the National Institute of Neurological Disorders and Stroke, research on stem cell therapy is ongoing.

“In the United States, the Food and Drug Administration requires evidence that a medical approach is both safe and effective before it approves its use,” Owens said. “Safety and efficacy are demonstrated by data acquired through clinical trials. Recently in the United States, a clinical trial has been proceeding that is evaluating the safety of transplanted neural stem cells in patients with a type of motor neuron disease known as amyotrophic lateral sclerosis.”

“The promise of both embryonic and adult stem cells for use in future therapies is exciting, but significant technical hurdles remain that will only be overcome through years of intensive research,” Kleitman added, noting the national institute supports a diverse array of stem cell research.

Although it’s not yet approved in the United States, Lang said it has been done successfully overseas. He said the procedure, like every medical procedure, carries some risk.

Anyone wishing to help Lang can contact him at artic11@verizon.net or Brian Lang, 1000 W. 28th St., Hazlewood Apartments, Apt. 103, Hazle Township, PA 18202.

jwhalen@standardspeaker.com

LEESBURG — The quest for a young boy to regain his sight is getting a little help from a Leesburg service organization.

The Leesburg Lions Club will be hosting a bake sale and car wash Saturday to benefit Jacob’s Hope for Sight, a campaign to help a seven-year-old boy diagnosed with a rare condition regain his sight.

According to Leesburg Lions Club Treasurer Lesley Barbosa, the club plans to hold the car wash and bake sale at Lee County Auto Service in Leesburg. The club is asking the public to make a monetary donation in exchange for a car wash or baked goods. The fundraiser is scheduled to begin at 8 a.m. Saturday.

“The Lions Club helps with vision, so this is the perfect opportunity to help on a local level,” said Barbosa.

Lions Clubs provide continuous support for sight programs and services including vision screenings, eye banks and eyeglass recycling.

Barbosa said seven-year-old Jacob, whose parents are Ashley Dollar and Jack Bradfield, was diagnosed with Optic Nerve Hypoplasia (ONH) in May 2003 after his parents realized their son was not following objects with his eyes in a normal manner.

ONH is a medical condition that results in the underdevelopment of the optic nerve. Because of the rare condition, Jacob shows autistic traits and does not communicate verbally.

There are few treatment options for ONH. While doing research on speech delays, Jacob’s mother learned of an advanced treatment of stem cell injections in China that has shown the capacity to improve sight for those who are vision-impaired. Recently, an Australian boy who was born blind showed signs of gaining light perception after one round of the stem cell treatment.

The stem cell treatment that could restore Jacob’s sight is currently not available in the United States and is not FDA approved. The procedure is not covered through the family’s insurance.

After weeks of researching stem cells, Jacob’s mother contacted a medical consultant at Beike’s Hospital in China where Jacob was approved to receive the stem cell injections. The treatments include several stem cell transfers of 10-15 million stem cells over a period of 20 to 30 days. Jacob will be in rehabilitation six days per week in an effort to train his eyes to see again.

The treatment will be performed at Qingdao Chengyang People’s Hospital in China, where Jacob and his family will have to live while he undergoes the treatment to restore his sight.

Jacob’s family started the Hope for Sight campaign in an effort to raise funds to provide for Jacob’s medical costs and travel to China. It is estimated that $40,000 will be needed to cover the family’s costs. According to Barbosa, $12,000 has already been raised for Jacob.
“We are trying to raise enough to get them the rest of the way to their goal,” said the Lions Club member.

LEWISBURG — An innovative procedure in China may soon allow a little girl from Lewisburg to live a normal life despite being diagnosed with a condition that has no cure.

Heather Schutt, who will turn 3 on May 26, is scheduled to receive stem cell injections next month at the Chengyang People’s Hospital in Quingdao, China. She was diagnosed with Optic Nerve Hypoplasia when she was 4 months old. Children with ONH have underdeveloped optic nerves, which leave them with little to no vision.

Heather’s mother, Sarah Schutt, said she took Heather to see a vision specialist in December, who determined that Heather’s central vision is affected; however, she can still pick up colors and light.
Heather also suffers from a seizure disorder and an underactive pituitary. She receives replacement hormones for the ones her pituitary does not produce, and is on seizure medication as well.

At the hospital, Heather will receive injections from umbilical cord stem cells, which have been shown to promote the growth of the optic nerves of ONH patients in research by Shenzen, China-based Beike Biotechnologies.“She’s scheduled for six treatments,” Sarah said. The treatments will go back and forth between IV injections and spinal taps, for which Heather will be sedated.Heather’s treatments will begin June 17 and she will be discharged on July 19. In addition to the stem cell injections, Heather will go through therapy to help her adjust to the physical changes she may experience.Sarah has been in contact with a family from Indiana whose daughter experienced the treatment.“I’ve been getting a lot of information from them,” she said. “They said she’s doing a lot better.”Sarah said the treatments aren’t allowed by the U.S. Food and Drug Administration because of the political controversy over stem cells, even though this treatment doesn’t use embryonic cells. The family has high hopes for the treatment.“Within 22 hours of the first treatment, they’ve seen improvements in children,” Sarah said.Sarah said she hopes to see “enough improvement that she can go to public schools.”“That’s my goal, too,” said Linda Troup, Sarah’s mother and Heather’s “Nana.”Troup wants Heather to have a chance to attend school because “you need friends and you need to be exposed to stuff when you’re young.”Sarah and her mother believe Heather can handle public school because of her resiliency.“She doesn’t have any fear,” said Troup.Many children with ONH are afraid to walk, but Heather “doesn’t care if she falls.”Sarah agreed: “She’s very independent.”The family has saved the $36,000 needed to pay for the treatment, but will be holding several fundraisers to pay for the plane tickets to China and other expenses.“We’re looking for as many donations as possible, just to keep the costs down,” Sarah said.Doctors told Sarah that Heather may be benefited by a seventh treatment, but it’s too early to tell. If the doctors recommend an additional treatment, she will need to have $3,500 on hand to pay up front.Sarah estimates the cost for plane tickets and passports for Heather, herself and Justin, her boyfriend, will add up to about $5,000.“We’ll be staying with her in the hospital,” Sarah said.The family has set up a medical expense trust fund through a lawyer for Heather at Mifflinburg Bank & Trust, and any leftover funds will be given to children with similar conditions who need treatment.“If there are other families in the area whose children have been diagnosed with ONH, they should contact us,” Troup said, adding that they will continue to hold fundraisers for children with Heather’s condition in order to give back to the community who has supported them in the past few years.To help finance the trip, Coming Together for a Cause will hold a cook-out and poker run fundraiser benefiting Heather Schutt from May 21 to 23 at SMC Motorycycle Club Grounds in Milton. Friday, May 21 will feature entertainment from a DJ, karaoke, bike games and beverages. Saturday will feature the poker run, food and performances from Audio Eleven and Triple Dose. Tickets can be ordered by calling 594-3858 or e-mailing comingtogetherforacause@yahoo.com.The family will also be selling candles and food to raise funds.Donations to Heather’s medical trust fund should be made payable to “Heather Schutt” Medical Expense Trust” and mailed to Mifflinburg Bank & Trust Co., P.O. Box 186, Mifflinburg, PA 17844.More information about donations or about Heather’s trip can be found at myspace.com/stemcells4heather. The family will keep in touch on their trip through e-mail; their address is stemcells4heather@live.com.Staff Writer Amanda Alexander can be reached at

570-742-9671

570-742-9671

or e-mail amanda@standard-journal.com.

SAN LORENZO VALLEY

Family raising money for stem cell treatment

The family of a San Lorenzo Valley man paralyzed in a dirt biking accident last year is raising money to send their son, now 20, to China to undergo stem cell therapy.

Jerry MacCallister dreamed of becoming an astronaut, but is now a quadriplegic who has slowly regained limited use of his hands, according to his family. A new stem cell therapy that involves harvesting adult stem cells from the patient’s own body may help him make more of a recovery, but the treatment is not available in the United States. It also isn’t covered by insurance.

The cost of traveling to China, a one-month stay and the medical procedure is about $40,000. The MacCallister family is asking for donations to help fund the trip and treatment. To help, send checks to the Jerry MacCallister Assistance Fund, 162 McPheeters Circle, Boulder Creek, CA 95006 or go online to the family’s blog, www.followingjerry.com.

Kaden Strek was born three months premature to a drug-addicted mother. Weighing 2 pounds, 12 ounces, he wasn’t expected to live.

If he did, he would be placed in an institution because of his disabilities, his adoptive mother, Eddie Strek, was told. He is blind, has limited speech, hydrocephalus (excessive fluid on the brain) and cerebral palsy.

But Strek, who learned she was pregnant with her first child two days before Kaden was born, wasn’t going to let him slip into the system.

“Sometimes you know it’s the right thing to do,” she said of the decision she and her husband, Tom Strek, made to adopt Kaden. They knew the boy’s mother.That decision was seven years, 15 surgeries and 29 therapists ago.

Now, the St. Clair Shores parents want to give Kaden a chance to see, speak and walk, through umbilical cord blood stem cell treatments that they said aren’t available in the U.S.

They are to hold a fund-raiser Sunday to pay for the treatments in China. Eddie Strek said the trip and the treatments, which would flood Kaden’s body with new cells to repair the damaged ones, are estimated to cost about $50,000. The family has about $20,000.

“We’re just trying to give him every opportunity we can,” said Strek, 42, a stay-at-home mom of three who is undergoing radiation for a noncancerous mass on her brain.

Umbilical cord blood stem cells are collected from the umbilical cord at birth and can produce all of the blood cells in the body. Cord blood is used to treat patients who have undergone chemotherapy to destroy their bone marrow because of cancer or other blood-related disorders, according to the National Institutes of Health.

There are public and private cord blood banks in the U.S., including in Michigan.

Strek said she hopes to take Kaden to China next summer. She hopes the treatments will improve his vision and ability to walk. He can walk about three house lengths with his U-shaped walker.

Strek is hopeful after seeing results in her friend’s 4-year-old daughter, who has cerebral palsy. Heather Hall, 38, of Harrison Township said her daughter, Brooklyn, showed improvement after the treatments in 2007.

Before the trip, Hall said, Brooklyn walked only about five steps, holding someone’s hand. Now, she walks 3 to 6 feet on her own at therapy. Hall said Brooklyn’s speech improved from one or two words to being age appropriate. Brooklyn is to attend preschool next year.

“We’ve been extremely pleased,” Hall said.

Strek knows the trip is a gamble. But so was the decision to adopt Kaden, and she doesn’t regret that for a second.

“If you have the opportunity to drastically change his life,” she said, “why wouldn’t you do it?”

Contact CHRISTINA HALL: 586-826-7265 begin_of_the_skype_highlighting              586-826-7265      end_of_the_skype_highlighting or chall@freepress.com

LAPEER — When Ashley Fuller’s first child, Johanvan, was born he was small. She had just turned 18. Other than being born with a severe case of jaundice she thought he looked just fine.

Months later, however, the crushing news came.

Her pediatrician sent her to a opthamologist and neurologist in Flint because Johnavan’s rapid eye movements were troubling.

What the doctors in Flint found changed everything. Johnavan, they said, was suffering from Septo-optic dysplasia (SOD) and Optic nerve hypoplasia (ONH), a pair of congenital defects that leave their sufferers blind or nearly so.

“It pretty much devastated me and my mom,” said Fuller, adding “I cried about it for a little while and then decided to do what’s best for him.”

The doctors did not give Fuller a lot of hope. Since SOD includes an absence of the midline part of the brain in addition to underdevelopment of the optic nerve, varying levels of mental retardation are involved.

At one point Johnavan, who’ll be seven in July, attended a center for the blind in Taylor, but now he takes classes for special needs students at the Lapeer County Intermediate School District’s Lapeer Education and Technology Center in Attica Township.

Fuller said her son has been on growth hormones since he was two; thyroid medication since he was three; and takes melatonin to help him sleep.

Ever since he was born, said Fuller, she and her mother have regularly scanned the Internet looking for something that would hold out hope of a normal life for Johnavan. “People kept saying, ‘There’s nothing you can do,’” she said.

Recently they discovered Beike Biotech. Based in Taizhou, China, the company has been conducting stem cell research since 1999 and offers adult stem cell therapies for a variety of serious medical conditions including ataxia, brain injury, cerebral palsy, diabetic foot disease, lower limb ischemia and optic nerve damage.

Fuller believes Beike Biotech can help her son see. She said the facility has treated nearly 100 children with 90 percent of them seeing at least some improvement.

However, Fuller is realistic about her son’s chances. “If it doesn’t happen, it doesn’t happen, but at least I tried.”

Trying, however, won’t be cheap. It’s a long way from Lapeer to China and they’ll have to stay there four to eight weeks and the treatment and travel costs will total about $60,000.

The medical treatment alone, she said, will cost $35,000 and Beike Biotech wants a 20 percent down payment before they’ll schedule a procedure.

Fuller’s insurance company won’t cover the procedure, which has yet to be approved in this country.

To cover the cost of the trip and treatment Fuller and her mother are planning a series of fund raisers.

The first will be a spaghetti dinner at the Attica Township Hall, 4350 Peppermill Road, Attica, from 4 to 8 p.m. Saturday. Tickets are $7 for people 12 to 64; $6 for people 65 and up; $4 for people 4 to 12; and free for anyone under 3. There will be a drawing for a potted arrangement every half hour and a 50/50 drawing.

She’s also set up a web site for Johnavan, www.hope4johnavan. weebly.com. Fuller can be reached at 810-660-7708 begin_of_the_skype_highlighting              810-660-7708      end_of_the_skype_highlighting.

Provided by: QMI
Written by: Eric Yvan Lemay, QMI Agency
May. 4, 2010

MONTREAL ­- Mia Couture suffers from a rare disease that has made her blind since birth. Her parents are willing to do whatever it takes to restore her vision and are planning to travel to China in a few weeks so she can get stem cell treatment.

There’s one problem: the 35-day treatment program will cost at least US$29,300. Add travel costs, meals and accommodations, and the total cost could be around US$40,000.“We know the costs are very high, but we still went ahead with this. It’s my child and nothing is going to discourage me,” said Cynthia Bradet, Mia’s mother.

Her seven-month-old daughter sees almost no light and only winces when something bright shines in her eyes.

When she was 18 days old, Mia was diagnosed with septo-optic dysplasia, a disease that affects one in every 10,000 children. The disease leads to underdeveloped optic nerves, which causes blindness.

Bradet discovered the Chinese treatment while doing research on the Internet. She got in touch with a mother in Louisiana who went to China with her five-year-old son. In the year following his treatment, the boy regained some vision and is now able to see as far as his feet.

“The earlier you have the treatment, the better the chance of success,” Bradet explained.

She said she spoke to a mother from Trois-Rivieres, Que., who took her child to China for stem cell treatment. Marlene Richer and her son Miguel plan to return to China in the coming months after seeing encouraging results from the boy’s initial treatment.

Bradet plans to leave for China on May 31 with her partner and Mia. Her daughter will receive seven stem cell injections.

Bradet said she’s a bit worried about Mia undergoing treatment in another country. “Yes, there’s some worry, but at the same time, her family doctor recognized there was nothing they can do here and that she could always try the treatment without recommendation,” she said.

“Doctors don’t want to give an opinion because it’s not something we have here. They don’t want to give an opinion on something they don’t know.” The trip to China is a huge expense for the Couture-Bradet family. They’ve taken out a loan to pay for the treatment but are trying to fundraise to help defray some of the costs.

Fundraising activities have been organized in their hometown of Victoriaville, Que.