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.

“Stem Cell Awareness Seminar”

August 28,2010 1:00pm – 5:00pm

Free Admission – open to the public

SEMINAR FOCUS:

Learn the Truth regarding the differences between embryonic and adult
stem cell treatments. Doctors, patients and others will share their
knowledge and experiences with you and answer any questions you may
have on stem cells.

Regenerative stem cell therapies for diseases, disorders and injuries
will be discussed: ALS, Alzheimer’s disease, Ataxia, Autism, Cerebral
Palsy, Diabetes, Heart disease, Lupus, Multiple Sclerosis, Muscular
Dystrophy, ONH & optic disorders, Parkinson’s disease, Spinal
Cord Injury and Stroke patients have shown significant improvements
after treatment.

Several doctors will speak about the progress they have noted in their
patients. They will share information with you both pre and post stem
cell therapies. You will also hear from several stem cell patients who
will share their personal experiences and views of this regenerative
therapy. You can also read documented case studies of adult stem cell
patients.

David Granovsky, author of “The Stem Cell Blog” and the 1st children’s
book on stem cells  “Super Stemmys Doris and the Super Cells”
will begin the discussions.

We look forward to meeting you!

LOCATION:

Marriott Tampa Airport Hotel

Tampa International Airport

4200 George J. Bean Pkwy.

Tampa, Florida 33607

Hotel Reservations 800-564-3440 , ask for Stem Cell awareness room
block or http://www.marriott.com/hotels/travel/tpaap
group Code= STCSTCA

SIGN UP:

Please RSVP by filling out the following survey:

STEM CELL AWARENESS SEMINAR SIGN UP SHEET/SURVEY

ORGANIZER’S CONTACT INFO:

Carol Petersen

Stem Cell Advocate

Ph: 1-941-235-0088

carolptrsn@msn.com

Joan Dean is 59 years and she is from Morristown, TN. She and I have been married since May 2001.

Dr Brothers’ OD on Optical Adult Stem Cell Therapies from Stem Cells China on Vimeo.

Source: Rouse Hill Times

VISION-IMPAIRED sisters Moana and Leilani Faasisila have returned from China where they had therapy to improve their sight – with promising results.

The Quakers Hill girls, aged seven and five, were born with Leber’s Congenital Amaurosis – while they were still in the womb their retinas were already deteriorating due to a missing protein.

Leilani has no depth perception and can only see colours that are vibrant.

Moana can only see bright light and shadow.

Their only hope of improving their sight was stem cell therapy in China – at a cost of $38,000.

Through the support of the Rouse Hill Renegades rugby union team and the Ettamogah Hotel, the community dug deep at a cocktail fundraiser in February and in March the family of six travelled to China so the girls could receive treatment.

The girls’ treatment consisted of three intravenous injections, three spinal injections of donated cord blood, acupuncture, acupressure and electrowave therapy.

Mum Honi Faasisila said: “While we were there we noticed very subtle differences in Leilani’s vision.

“She noticed things she wouldn’t normally, she was able to differentiate between subtle colour and depth changes.”

Tests showed Moana’s optic nerve function had improved and she can see greater detail over greater distances.

The girls will be retested after six months to allow the stem cells time to further improve the damage.

“It’s unknown how far they will truly go and every person is different,” Mrs Faasisila said.

“We have no regrets. There were no guarantees to begin with.

“As parents, we know we made the right decision and with subtle differences already it means a better quality of life for the girls.

“Any improvement is a blessing.”

]]> http://stemcellaware.com/2010/02/bikers-have-heart-help-ty-to-see-more/feed/ 0 http://stemcellaware.com/2010/02/call-family-gives-thanks/ http://stemcellaware.com/2010/02/call-family-gives-thanks/#comments Wed, 24 Feb 2010 02:11:05 +0000 Lucy http://stemcellaware.com/?p=761

Source: Adirondack Daily Enterprise

Dear community members, friends and family:

We have been home from China for a month now and wanted once again thank you from the bottom of our hearts thank you for the fundraising events, the private gifts sent, for your love and support, because of you London hasa chance to improve her life.

Thank you, Adirondack Daily Enterprise and Adirondack Arc for letting Grandma Ruby and Jessie have this extended time off from work so we were able to take London for treatments. While we were in China we were blessed to be able to haveLondon receive9 stem cell treatments rather than the 8 we had planned on. Because of all the support; London, received approximately 90 million stem cells over a 40- day stay in China, 5 procedures by IV and 4 by lumbar puncture. Before we left for her treatments she only said afew words, Momma, Daddy, Nanna and Cy (her brother).

Today she has added hi, no, ut oh, good and good girl to her vocabulary. She will stand with assistance now and can push from laying down to a sitting position,she will get on her hands and knees as if to crawl,and hopefully soon she will be walking. The stem cells are not only helping in the way of sight, but in her ability to learn and live a more productive life.

London has light perception now and her eyes are dilating, also things she did not have before she received these treatments. In addition to the stem-cell treatments she also had daily physical therapy, acupressure and electric wave therapy over the 40 day stay in China.Oh, at times it was very hard and heartbreaking to watch her being poked and prodded at so many days in a row, and being separated from our families and friends, but it is all worth it and we are blessed to have had the opportunity to take herfor treatments that will change her life.

We see small changes on nearly a daily basis, and this is only the beginning, as the stem cells will continue to grow for up to a year. Again we just wantedto thank you all for helping to make these treatments possible for our little London Ruby. Nothing we say can convey the love and thanks we hold in our hearts for everyone who reached out to London.

If you would like continued updates, we are still posting on London’s China stem-cell blog so the staff at the wonderful hospital can see her progress as well as our family and friends. I would also like to thank the doctors, nurses, translators and staff at Qingdao Peoples Hospital for making our stay in Qingdao China as comfortable as possible.Let us not forgetto thank the wonderful women who donated their umbilical cord stem cells; without them, this also would never have happened. May you all be blessed for all you have done.

From the bottom of our hearts,

London Ruby Call and family

To follow London’s progress: stemcellschina.com/blog/londonruby. ]]> http://stemcellaware.com/2010/02/call-family-gives-thanks/feed/ 0 http://stemcellaware.com/2010/02/parents-pin-their-hopes-on-chinese-therapy/ http://stemcellaware.com/2010/02/parents-pin-their-hopes-on-chinese-therapy/#comments Mon, 01 Feb 2010 14:38:55 +0000 Lucy http://stemcellaware.com/?p=726 Source: Timeslive

All Chanaé Pillay wants for her seventh birthday in five days’ time is an opportunity to “do all the stuff my baby sister and most kids can, like sit on her own in the swing, play in the pool and walk on the sand on the beach”.

Pillay, who was diagnosed with cerebral palsy when she was a year old, has a chance to have her condition treated after being accepted as a candidate for controversial and costly stem cell therapy in China.

The little girl from Pinetown cannot walk and has trouble holding her head up and using her hands.

Her family received a letter from the Shenzhen Beike Biotechnology Centre that said she was a candidate for treatment. The company prepares various types of stem cells to treat serious medical conditions.

Her parents, Tracy and Dashen, are now trying to raise the nearly R500000 required for the treatment by arranging fundraising events.

“We were doing our own research and saw a success story that involved the centre, and we decided to try to get Chanaé in,” said Tracy.

She said they were aware that the treatment was not guaranteed and controversial, but they were prepared to do whatever it took to help their daughter.

Another stem cell therapy candidate in need of funding is 30-year-old Seimi Pillay, who suffers from muscular dystrophy, a hereditary muscle disease that weakens the body’s muscles. Owing to her condition, she is unable to have children.

She received confirmation last September that she was a suitable candidate. The cost of the trip to China and the treatment will be almost R286000.

“These costs are vast and I do not have the money. The treatment may or may not work. I am aware of that, but I am willing to take the chance,” said Seimi.

Readers interested in helping Dashen and Tracy Pillay can contact the family on 082 9977443 or 0829970578. Seimi can be contacted on 0837998505.

BOURTON’S Kelly Soper will do a 13,000-foot parachute jump to help raise about £16,000 to fund surgery that would restore the sight of a pensioner she has never met.

Kelly, 33, will do the tandem jump at Brize Norton, Oxfordshire on Mothering Sunday – March 14 – to raise as much sponsorship money as possible for Dorothy Leach.

Dorothy, 75, has lived in Hardwicke, Gloucester with husband, Percy, for 53 years.

They have four children, seven grandchildren and two great grandchildren.Visiting her first great grandson while on holiday in February 2009, Dorothy complained of a headache and so took pain killers and went to bed early.

She woke up next morning totally blind.

Her second great grandson was born two weeks later.

Doctors discovered arthritis of the blood cells caused Dorothy’s sudden blindness.

Stem cell treatment is the only possible cure but the kind Dorothy needs is only available in China.

China’s Qingdao Chengyang People’s Hospital has accepted her for treatment but it will cost about £16,000.

Kelly has been fundraising since the age of 12 and has generated about £34,000, for various charities, over the past decade.

She was so touched by Dorothy’s plight, after learning of it from a television newscast, that she determined to help.

Kelly chose to do a parachute jump because she knew it was a means of raising a lot of money, having raised £1,200 for London’s St George’s Hospital by doing a one about two-and-a-half years ago.

She is planning other fundraising events for Dorothy.

Kelly said: “It was just the fact that somebody, unfortunately, could lose their sight overnight.

“It’s sad to have a great grandchild and you can’t even see.”

To sponsor Kelly, telephone 01451 824489.

For details of Dorothy’s fundraising drive, visit www.patleach.co.uk